CAREGIVING IN THE U.S.
National Alliance for Caregiving and AARP
April 2004
Funded by MetLife Foundation
Acknowledgements
The National Alliance for Caregiving in collaboration with AARP and funded by
Met Life Foundation is proud to present Caregiving in the U.S.
Many people played important roles throughout the research process including
the following:
Gail Gibson Hunt, National Alliance for Caregiving
Elinor Ginzler, AARP, State and National Initiatives
Linda Barrett, Ph.D., AARP, Knowledge Management
NAC Advisory Panel
Marge Cantor, Fordham University
John Crews, DPA, Centers for Disease Control and Prevention
Pamela Doty, Ph.D., U.S. Department of Health and Human Services
Lynn Friss Feinberg, PhD, Family Caregiver Alliance
Rick Greene, Administration on Aging
Carol Levine, United Hospital Fund
Katie Maslow, The Alzheimer’s Association
Skip Schlenk, AT&T (Retired)
Melissa Talamantes, University of Texas
Donna Wagner, Ph.D., Towson University
Donna Yee, Asian Community Center, Sacramento, CA
The research was conducted by Belden, Russonello & Stewart for the National
Alliance for Caregiving and AARP under the direction of Linda L. Barrett, Ph.D,
and reviewed by senior research advisors in AARP’s Knowledge Management.
©2004 NAC and AARP
Reprinting with Permission
Caregiving In the U.S.
Table of Contents
I.
Introduction .......................................................................................3
II.
Overview of Methodology ..............................................................4
III. Key Findings......................................................................................6
IV. Detailed Findings ............................................................................18
A.
B.
C.
D.
E.
F.
G.
H.
I.
J.
K.
L.
Prevalence of Caregiving in U.S. ...............................................18
Profile of Caregivers ....................................................................20
Characteristics of Caregiving Situation ....................................32
Recipients of Care ........................................................................34
Intensity of Caregiving................................................................44
Caregiver Support........................................................................53
Strain and Stress of Caregiving..................................................56
Coping with Stress .......................................................................68
Use of Supportive Services in the Community........................70
Unmet Needs for Help, Information, or Support....................72
Spotlight on Racial/Ethnic Subgroups .....................................77
Comparing Caregivers by Age of Recipient ............................80
Appendix A: Detailed Methodology
Appendix B: National Questionnaires with Topline Results
Appendix C: CATI Questionnaire
List of Tables and Figures
Tables
Table 1:
Table 2:
Table 3:
Table 4:
Table 5:
Table 6:
Table 7:
Table 8:
Estimated Percent of Caregivers in U.S. and Within Each
Ethnic/Racial Group ....................................................................................20
Estimated Number of Caregivers in U.S. and Within Each
Ethnic/Racial Group ....................................................................................20
Caregivers by Level of Burden Index.........................................................21
Caregiver Demographics by Level of Burden Index................................22
Demographic Profile of Caregivers by Race .............................................25
Employment Status by Age and Other Characteristics ...........................31
Care Recipient by Age (Top Mentions)......................................................35
Performance of ADLs & IADLs: Total and by Level 1, Level 4, and
Caregiving in the U.S.
Level 5 Caregivers.........................................................................................47
Table 9: Work-Related Adjustments by Level of Burden.......................................65
Table 10: Comparing Caregivers Characteristics by Age of Recipient .................82
Table 11: Demographic Profile of Caregivers by Age of Recipient ........................83
Figures
Figure 1: Relationship between Caregiver and Care Recipient ………………......7
Figure 2: Gender of Caregivers ……………………………………………………...8
Figure 3: Age of Care Recipient ………………………………………………………9
Figure 4: Caregiver Level of Burden ………………………………………………. 11
Figure 5: Fair or Poor Health Status ……………………………………………….. 17
Figure 6: Gender of Caregivers ....................................................................................23
Figure 7: Age of Caregivers ..........................................................................................24
Figure 8: Marital Status of Caregivers ........................................................................26
Figure 9: Education of Caregivers ..............................................................................27
Figure 10: Income of Caregivers ..................................................................................29
Figure 11: Employment Status of Caregivers ............................................................30
Figure 12: Number of Care Recipients........................................................................32
Figure 13: Duration of Care for Recipient ..................................................................33
Figure 14: Relationship between Caregiver and Care Recipient ............................34
Figure 15: Age of Care Recipient .................................................................................36
Figure 16: Main Problems or Illnesses Identified by Caregiver ..............................38
Figure 17: Percentage of Care Recipients Taking Medication .................................40
Figure 18: Distance of Caregiver to Recipient............................................................42
Figure 19: Living Arrangements of Care Recipient ..................................................43
Figure 20: Hours of Care Provided Per Week............................................................44
Figure 21: Number of Visits to Care Recipient ..........................................................45
Figure 22: Helping with IADLs....................................................................................48
Figure 23: Helping with ADLs .....................................................................................50
Figure 24: Home Modifications and Assistive Devices............................................51
Figure 25: Other Unpaid Help Provided By ..............................................................53
Figure 26: Type of Paid Care ........................................................................................55
Figure 27: Fair or Poor Health Status ..........................................................................57
Figure 28: Emotional Stress of Caregiving .................................................................59
Figure 29: Choice of Becoming a Caregiver ...............................................................60
Figure 30: Impact of Caregiving on Family and Leisure Activities........................62
Figure 31: Impact of Caregiving on Work ..................................................................64
Figure 32: Financial Hardship on Caregivers ............................................................66
Figure 33: Coping with Demands of Caregiving ......................................................68
Figure 34: Use of Outside Services ............................................................................. 70
Figure 35: Unmet Needs................................................................................................73
Figure 36: Reporting One or More Unmet Needs .....................................................74
Figure 37: Where Caregivers Would Seek Information (Top Mentions) ...............75
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Caregiving in the U.S.
I.
Introduction
People who care for adult family members or friends fulfill an important role not
only for the people they assist, but for society as a whole. While this care is
unpaid, its value has been estimated at 257 billion dollars annually.1 Although
caregivers make many contributions, being a caregiver may take a personal toll.
We find the demand on caregivers’ time can range from a few hours a week to 40
or more hours per week - essentially constant care. Caregivers also provide a
range of activities. These activities can be relatively undemanding, such as
driving the person you care for to an appointment. Or the activities can be
highly demanding, such as bathing, dressing, and feeding the care recipient.
Therefore, it is not surprising that some caregivers report experiencing little
physical strain, emotional stress, or financial hardship as a result of providing
care, while others report a far different experience.
The purpose of this study is to update and expand our knowledge about the
activities caregivers say they perform, the perceived impact of caregiving on
their daily lives, and the unmet needs of this population. We believe our study
makes several unique contributions. For example, this is the first study to our
knowledge that includes caregivers ages 18 and older who care for people ages
18 and over.
Secondly, while we asked respondents if they are caregivers, we also asked them
whether or not they help the person they care for with at least one activity of
daily living (such as helping another get in and out of beds or chairs, get dressed,
get to and from the toilet, bathe or shower, eat, and so forth) or instrumental
activity of daily living (such as helping another manage finances, shop for
groceries, do housework and so forth). By using this definition of caregiving, we
narrowed our focus on those people who are actively engaged in providing
specific types of care.
One of the tools we adopted to understand the variety of experiences caregivers
face is the Level of Burden Index.2 Level of Burden is based upon an index
derived from the activities of daily living (ADLs), instrumental activities of daily
living (IADLs), and amount of time devoted to caregiving.
1
Arno, P. S. Economic Value of Informal Caregiving. Annual Meeting of the American Association of
Geriatric Psychiatry, Orlando, FL, February 24, 2002.
2
Family Caregiving In The U.S.: Findings from a National Survey, National Alliance for Caregiving and
AARP, 1997.
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Caregiving in the U.S.
There are five successive levels of caregiver burden or intensity. Each level
involves a higher degree of caregiving responsibility ranging from the least
amount of responsibility at Level 1 to the greatest amount of responsibility at
Level 5. This measure is important because Level of Burden, having a choice to
take on caregiving responsibilities, and caregivers’ reported health status appear
to have the greatest influence on whether caregivers perceive emotional stress,
physical strain, or financial hardship as a result of being a caregiver.
II. Overview of Methodology
This study is based on a national survey of 6,139 adults in the U.S., from which
1,247 caregivers were identified.3 Caregivers are defined as 18 years of age or
older living in the U.S., and providing one or more ADLs or IADLs for someone
18 years of age or older. The 1,247 caregiver interviews include a total of
approximately 200 African-American, 200 Hispanic, and 200 Asian-American
caregivers obtained through over-sampling. Interviewing was conducted from
September 5 through December 22, 2003.
The questionnaire was designed by a research team representing the National
Alliance for Caregiving (NAC), AARP, Belden Russonello & Stewart, and
Research / Strategy / Management. The team drew from a 1997 NAC / AARP
study on caregiving, and made several revisions and additions to update and
expand the survey.4 All interviews were conducted by telephone. Most
interviews were conducted in English. A Spanish version of the interview was
initially offered to non-English speaking people of Hispanic descent.
The majority of the sample was obtained by using a random digit dial technique.
However, we found that the incidence of caregivers in the Hispanic and Asian
ethnic sub-groups was so small that additional targeted and surname samples
were used, as well as an existing representative panel, to achieve the desired
sample size.5 At this point, we were no longer able to offer the option of
conducting the interview in Spanish.
3
All respondents live in the continental U.S. Most respondents were interviewed in English. This means
that caregivers drawn from the three ethnic sub-groups under-represent recent immigrants for first
generation caregivers who speak little or no English.
4
Family Caregiving In The U.S.: Findings from a National Survey, National Alliance for Caregiving and
AARP, 1997.
5
While the proportion of some ethnic sub-groups has been increasing in the general population, the
incidence of caregivers within these sub-groups remains small and special techniques were required to
reach them.
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Caregiving in the U.S.
To estimate the proportion of caregivers and caregiving households in the U.S.,
demographic and household data were obtained from a randomly selected
respondent in each household contacted. The randomly selected respondent
was asked whether or not a caregiver lives in the household. For the purposes
of this study, caregivers were identified by self report and by verifying that he or
she assists another with at least one ADL or IADL.
The survey results are weighted by household, based on the demographic data
(gender, age, race, and household type) obtained from the randomly selected
respondent in each household contacted. The same weight is used to estimate
caregiving households in the U.S. A population weight, created from the
gender, age and race of the randomly selected respondent, is used to estimate the
proportion of caregivers in the U.S. adult population.
The sampling tolerance for a sample size of 1,247 is plus or minus 2.8 percentage
points at the 95% confidence level. This means that 95 times out of 100, a
difference of greater or less than 2.8 percent would not have occurred by chance.
Reading this report
When reading this report, it is helpful to understand that when the percent sign
(%) appears at the top of a column, the numbers add vertically; when the %
appears at the left of a row, the numbers add horizontally. An asterisk (*)
indicates less than one percent; a double hyphen (--) indicates zero. All figures
have been rounded so all tables may not add to 100%. This is due to weighting,
rounding, omission of “don’t know,” or “refused,” and other responses. In the
case of multiple response questions, percentages may add to more than 100%.
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Caregiving in the U.S.
Key Findings
One of our original questions was: “How many caregivers are there in the U.S.?”
We estimate there are 44.4 million American caregivers (21% of the adult
population) age 18 and older who provide unpaid care to an adult age 18 or
older.6 These caregivers are present in an estimated 22.9 million households
(21% of U.S. households).7
We are aware that other studies estimate the number and/or proportion of
caregivers in the U.S. and that the estimates vary from one study to another. 8,9,10
One of the primary reasons for this variation is that different studies use different
definitions of caregiving and caregivers often do not identify themselves with
this role. The use of different research methods may also influence the results.
We meticulously gathered all the information we needed to make accurate
estimates of our caregiver population. Full details describing how these
estimates were calculated appear in Appendix A.
In addition to determining these broad population estimates, several key themes
emerged from the data. Not surprisingly, we find one’s caregiving experience
varies by caregiver and care recipient profiles (demographic characteristics) and
by caregivers’ perceived level of burden.
Profile of caregiving
Almost seven in ten (69%) caregivers say they help one person. Nearly half
(48%) of all caregivers say they provide eight hours or less of care per week and
one in five (17%) say they provide more than 40 hours of care per week. The
average length of caregiving is 4.3 years.
6
The actual numerical estimate of caregivers is 44,443,800.
The actual numerical estimate of caregiving households is 22,901,800.
8
AARP Caregiver Identification Study, AARP, February 2001.
9
Random Sample Survey of 1000 Adults, National Family Caregivers Association, Summer, 2000,
www.nfcacares.org.
10
How Many Caregivers in the U.S.? National Family Caregivers Association, www.nfcacares.org.
7
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Caregiving in the U.S.
Caregivers tend to live near the people they care for. Among caregivers who do
not live with the person they care for, a large majority (85%) say they live within
an hour of their care recipient and 74% say they visit at least once a week. One in
four (24%) says the person they care for lives with them.
Many caregivers fulfill multiple roles. Most caregivers are married or living
with a partner (62%), and most have worked and managed caregiving
responsibilities at the same time (59%). The great majority of caregivers (83%)
are helping relatives (Figure 1).
Figure 1: Relationship between Caregiver and Care Recipient
Q1b. What [is/was] this person’s relationship to you?
17%
Relatives
Outside family
83%
Base: 1,247 caregivers in the U.S.
Source: Caregiving in the U.S., National Alliance for Caregiving and AARP, 2004.
Caregivers are often stereotyped as women taking care of women. Like most
stereotypes, there is a kernel of truth at the core of this one. The typical caregiver
is a 46 year old woman who has at least some college experience and provides
more than 20 hours of care each week to her mother.
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Caregiving in the U.S.
Although the caregiving landscape is still dominated by women helping women,
the proportion of caregivers who are men is substantial. Nearly four in ten
caregivers are men (Figure 2).
Figure 2: Gender of Caregivers
39%
61%
Women
Men
Base: 1,247 caregivers in the U.S.
Source: Caregiving in the U.S., National Alliance for Caregiving and AARP, 2004.
Male caregivers are more likely to be working full-time (60%) than female
caregivers (41%) and female caregivers are more likely to be working part-time
(14%) than male caregivers (6%).
Male caregivers tend to help other men while female caregivers help fewer men
(35% v 28%). That is, about one in three (35%) of male caregivers help male care
recipients, whereas only 28% of female caregivers help male care recipients.
Male caregivers are more likely to be working full or part-time than female
caregivers (66% v 55%).
Overall, female caregivers are providing more hours of care and they are
providing a higher level of care than male caregivers. For example, women
spend an average of four hours more caregiving per week than men (22.9 hours
for women v 18.9 hours for men). Seven in ten (71%) Level 5 caregivers are
women and three in ten Level 5 caregivers are men (29%). Women and men are
more evenly split at lower levels of care (58% of Level 1 caregivers are women,
42% of Level 1 caregivers are men and 55% of Level 2 caregivers are women, 45%
of Level 2 caregivers are men). Women are also more likely to say they feel they
did not have a choice in taking on this role than men (42% v 34%).
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Caregiving in the U.S.
Given these findings, it is not surprising that women are more likely to report
experiencing emotional stress as a result of caregiving than men (40% v 26% in
the two more serious stress rating levels of four and five on a five point scale).
Women and men report equal proportions of physical strain (16% and 13%
report four or five on a five point scale) and financial hardship (13% and 11%
report four or five on a five point scale).
Profile of Care Recipients
Most care recipients are female (65%) and many care recipients are widowed
(42%). One in five care recipients is between the ages of 18–49 years, and nearly
eight in ten care recipients is age 50 or older (Figure 3).
Figure 3: Age of Care Recipient
50+
18-49
Missing
20%
79%
Base: 1,247 caregivers in the U.S.
Source: Caregiving in the U.S., National Alliance for Caregiving and AARP, 2004.
More than half of care recipients live in their own home (55%).
The average age of younger care recipients (ages 18-49) is 33 years old.
Caregivers who help someone between the ages of 18-49 years old say the most
common main problem or illness the person they care for has is a mental illness
or depression (23%). Another 5% are mentally retarded – resulting in nearly
three in ten care recipients who are in need of care for non-physical reasons.
Caregivers of young adults (ages 18-49) are likely to be taking care of their own
children (27%), a non-relative (25%), or a sibling (15%). Many younger care
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Caregiving in the U.S.
recipients are single (45%) or divorced (16%). About one in four lives alone
(26%).
The average age of care recipients 50+ is 75 years old. Caregivers who help
someone age 50 or older say the main problem or illness the person they care for
has is aging (15%) followed by diabetes, cancer, and heart disease. One quarter
(25%) of caregivers helping someone age 50 or older reports the person they care
for is suffering from Alzheimer’s, dementia, or other mental confusion but less
than one in ten (8%) say this is their care recipient’s main problem or illness.
Caregivers of older adults (age 50+) are likely to be taking care of their mother
(34%), grandmother (11%), or father (10%). Many older care recipients are
widowed (52%). More than half (53%) live alone.
Most caregivers (85%) say the person they care for takes prescription medicine.
This is especially the case for care recipients over age 50. Caregivers say that
nine in ten care recipients (92%) age 50 or older take prescription medicine
compared to six in ten (60%) of those under age 50. Slightly more than half of
caregivers who say the person they care for takes prescription medicine also say
their care recipient manages their prescription use well on her or his own (55%).
On the other hand, 45% of caregivers of people who take prescription medicine
say their care recipient needs someone to oversee or manage their medication
usage.
Carrying the Load
More than one in three (37%) caregivers say no one else provided unpaid help to
the person they care for during the past 12 months. Among caregivers who say
someone else did help provide assistance during the past 12 months, one in three
(34%) say they provide most of the unpaid care, 55% say someone else provided
most of the unpaid care, and 10% say they split the care 50/50. When others
provide unpaid care, the help usually comes from the care recipient’s children
(42% daughter, 26% son).
Using the services of paid personal helpers is less common than obtaining help
from unpaid caregivers. Among caregivers who help those living outside of a
nursing home, only four in ten (41%) say their care recipient received paid
services from an aide or nurse, hired housekeeper, or other people who are paid
to help the care recipient during the past 12 months.
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Caregiving in the U.S.
Almost half (48%) of caregivers say they asked for, or used, at least one of a
variety of services we inquired about including such things as asking for
information about how to get financial help for their care recipient (25%), or
having an outside service provide transportation for their care recipient (18%).
Conversely, slightly more than half (52%) of the caregivers say they did not ask
for, or use, any of the services listed.
The use of outside services varies by where caregivers say the care recipient
lives. Care recipients who live in urban areas are more likely to use any of the
outside services we asked about compared to care recipients who live in
suburban or rural areas (58% urban 42% suburban v 44% rural).
With regard to specific services, care recipients who live in urban areas are more
likely to use a transportation service than those who live in a suburban or rural
area (24% urban v 17% suburban v 13% rural). Caregivers who say the care
recipient lives in an urban area are also more likely to say they have requested
information about how to get financial help for their care recipient than those
who have care recipients living in suburban or rural areas (33% urban v 19%
suburban v 22% rural).
As noted earlier, the level of care that caregivers say they provide has an impact
on the caregiver’s load. Half of all caregivers (50%) age 18 and older say they
provide care at the lower ranges of the Level of Burden Index (33% at Level 1 and
17% at Level 2) see Figure 4. Fifteen percent of caregivers say they are in the
middle of the Index, and about three in ten say they provide care at the higher
range of the Index (21% at Level 4 and 10% at Level 5).
Figure 4: Caregiver Level of Burden
10%
Level 5
21%
Level 4
15%
Level 3
17%
Level 2
33%
Level 1
0%
20%
40%
60%
80%
100%
Base: 1,247 caregivers in the U.S.
Source: Caregiving in the U.S., National Alliance for Caregiving and AARP, 2004.
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Caregiving in the U.S.
Although a minority (10%) of caregivers say they provide care at Level 5, these
caregivers are involved in the most intense caregiving situations. Their intense
caregiving responsibilities are no doubt complicated by the fact that these
caregivers tend to be older and are more likely to say their health is only fair
compared to other caregivers.
Impact on Caregivers’ Lives
Most caregivers say they experience little physical strain (67% rate it a one or two
on a five point scale), emotional stress (44% rate it a one or two on a five point
scale), or financial hardship (77% rate it a one or two on a five point scale) as a
result of being a caregiver.
However, the impact of caregiving on caregivers’ lives is influenced by their
reported Level of Burden. Generally, caregivers who say they provide Level 1
care are less impacted by their responsibilities than those who say they provide
Level 5 care. Given the intense responsibilities faced by Level 5 caregivers, it is
not surprising that this group is more likely to say they experience physical
strain (46% rate it four or five on a five point scale v 3% of Level 1), emotional
stress (63% rate it four or five on a five point scale v 15% of Level 1 caregivers),
and financial hardship (34% Level 5 rate it four or five on a five point scale v
6% Level 1).
Our analysis shows that the two greatest predictors of caregivers’ physical strain
are the caregivers reported health and whether they feel they had a choice in
taking on caregiving responsibilities. Caregivers who report poorer health and
those that feel they did not have a choice in taking on this role perceive the
greatest physical strain. Another factor which also contributes to caregivers’
physical strain is Level of Burden. The higher the Level of Burden, the greater
the caregivers’ perceived physical strain.
Our analysis also shows that the two greatest predictors of caregivers’ emotional
stress are their Level of Burden and whether or not the caregiver feels they had a
choice in taking on caregiving responsibilities. Caregivers at the highest Level of
Burden and those that feel they had no choice perceive the highest levels of
emotional stress. Other factors which contribute to caregivers’ emotional stress
are caregivers’ reported health, living in the same household with the care
recipient, and being female.
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Caregiving in the U.S.
Almost half of Level 5 (49%) caregivers say they need help managing their stress,
and finding time for themselves (53%). Level 5 caregivers are also more likely to
say they have less time for friends and family (84% v 29% at Level 1) as well as
vacations, hobbies or their own social activities (76% v 23% at Level 1). Nearly
half (49%) of Level 5 caregivers say they are getting less exercise than before
becoming a caregiver (compared to only 9% of Level 1 caregivers). Not
surprisingly, Level 5 caregivers rate their own health lower than caregivers at
other levels, and they are more likely to say that caregiving has affected their
health by making it worse than caregivers at other Levels (34% for Level 5 v
8% for Level 1).
While most caregivers report they experience little financial hardship as a result
of being caregivers, Level of Burden also impacts this caregiver experience.
One in three Level 5 caregivers reports experiencing financial hardship (34% rate
financial hardship as a four or five on a five point scale compared to 6% of Level
1 caregivers). Furthermore, Level 5 caregivers are the least likely to be
employed full or part-time (43% v 63% of Level 1 caregivers), and on average,
they say they spend more money on the person they care for than caregivers at
other levels ($324 per month v $142 for Level 1 caregivers excluding care of
spouses). They are also more likely to say they have asked for information on
getting financial help for the person they care for than caregivers at other levels
(35% v 20% of Level 1 caregivers).
Our analysis shows that the two greatest predictors of caregivers’ financial
hardship are Level of Burden and whether they feel they had a choice in taking
on caregiving responsibilities. Caregivers at higher Levels of Burden and those
who do not feel they had a choice to take on this role report greater financial
hardship. Other factors contributing to financial hardship are the caregiver’s
age, health, and living with the care recipient. The older the caregiver, the
poorer the caregiver’s perceived health, and living with the care recipient
increase the reported level of financial hardship.
Finally, nearly six in ten caregivers (59%) say they have worked at some time
while they were actively providing care. Of these, six in ten (62%) say they had
to make some work-related adjustments in order to help the person they care for.
More than half (57%) of working caregivers say that as a result of their
caregiving responsibilities they have had to go in (to work) late, leave early, or
take time off during the day to provide care.
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Caregiving in the U.S.
Caregivers’ Unmet Needs
We asked caregivers if they felt they needed more help or information on
fourteen items. We find two in three (67%) caregivers say they need help or
information with at least one of these items. The most frequently reported unmet
needs are finding time for myself (35%), managing emotional and physical stress
(29%), and balancing work and family responsibilities (29%).
In addition, we asked caregivers if they used at least one of seven outside
services such as how to get financial help, transportation, meals on wheels,
respite, adult day care and so forth. Almost half (48%) of caregivers say they use
at least one of these outside services. Among these caregivers (who already use
outside services) almost eight in ten (79%) say they still need help with such
things as finding time for myself, managing my emotional and physical stress,
and balancing work and family responsibilities.
It is noteworthy that about three in ten caregivers say they need help keeping the
person I care for safe (30%) and finding easy activities I can do with the person I
care for (27%). One in five caregivers say they need help talking with doctors
and other healthcare professionals (22%) or making end-of-life decisions (20%).
We asked caregivers where they would turn for information to help them with
some aspect of helping to take care of the person they support. Almost three in
ten say they would turn to the Internet (29%) or a doctor (28% - another 10%
would turn to a nurse or other health professional). Caregivers who turn to the
Internet for information are likely to look for information about health conditions
and treatments (88%) or information about services available for people like they
care for (55%). Caregivers with higher Levels of Burden are more likely to turn
to doctors, nurses and other health professionals than people with lower Levels
of Burden. For example, four in ten (42%) Level 5 caregivers turn to doctors for
information compared to one in four (24%) Level 1 caregivers.
Finally, we asked caregivers about seven different ways they might cope with
their caregiving responsibilities. Nine in ten (91%) caregivers say they use at
least one of these methods to cope. Seven in ten (73%) caregivers say praying
helps them cope with caregiving stress, six in ten (61%) caregivers say they talk
with or seek advice from friends or relatives, and four in ten (44%) caregivers say
they read about caregiving in books or other materials.
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Caregiving in the U.S.
Caregivers in ethnic sub-groups
We over-sampled three ethnic sub-groups for this study to examine whether
these groups have different caregiving experiences. The over-sampled groups
are African-Americans, Hispanic and Asian Americans.
More than one in three (35%) African-American caregivers say they spend one to
eight hours per week providing care. African-American caregivers are more
likely to say they spend 9-20 hours a week providing care than white caregivers
(31% v 21%). African-American caregivers are also more likely to say they have
children less than 18 years of age living in their household than white, Hispanic
or Asian caregivers (53% v 35% white, 39% Hispanic, 34% Asian). AfricanAmerican caregivers are more likely to be single, never married than white or
Hispanic caregivers (32% v 14% white, 23% Hispanic).
African-American caregivers are more likely to say they were working while
they were a caregiver than white caregivers (68% v 56%). They are also more
likely than white caregivers to say they spend $101 - $500 in a typical month for
groceries, medicines, or other kinds of cash support for the non-spousal person
they care for (36% v 22%). Therefore, it is not surprising that African-American
caregivers are more likely than white, Hispanic, and Asian caregivers to say
caregiving is a financial hardship (22% v 10% white, 14% Hispanic, 11% Asian
caregivers reporting 4 or 5 on a 5 point scale). African-American caregivers are
also more likely to ask for information on how to get financial help for the person
they care for than Asian caregivers (30% v 19%).
More than eight in ten (84%) African-American caregivers say they cope with
caregiving stress by praying.
Hispanic caregivers are more likely to say they live with the person they care for
than white caregivers (34% v 22%) and they are also more likely to say they help
the person they care for with at least one ADL than white caregivers (59% v
48%). Hispanic caregivers are more likely to say they provide Level 4 care than
white caregivers (14% v 8%). Like African—American caregivers, Hispanic
caregivers use praying as a method of coping with the stress of caregiving (79% v
71% white, 50% Asian caregivers).
Asian caregivers are likely to be well educated (61% have at least four years of
college v 36% white, 30% of African-American, and 27% Hispanic caregivers).
Asian caregivers report higher household incomes than other caregivers from
other ethnic backgrounds and are more likely to say caregiving is not a financial
PAGE 15
Caregiving in the U.S.
hardship by rating it one or two on a five point scale (77% v 66% AfricanAmerican).
Caregivers by age of recipient
Almost eight in ten (79%) caregivers provide care to someone age 50 or older and
two in ten (20%) caregivers provide care to someone between the ages of 18-49
years. When we look more closely at these two groups, several distinctions
emerge.
Caregivers who care for someone age 50 or older tend to be helping their
mothers (34%), grandmothers (11%), or fathers (10%). The average age of these
care recipients is 75 years. Almost two in three (65%) of these caregivers say
other unpaid helpers provide assistance. In addition, almost half (46%) of
caregivers who help others age 50 and older who are not living in a nursing
home say their care recipient also received some paid help within the past year.
Caregivers who care for someone between the ages of 18-49 years are more likely
to say they are caring for an adult child (27%), a non-relative (25%) or a sibling
(15%). The average age of these care recipients is 33 years. Less than four in ten
(38%) of these caregivers say other unpaid helpers provide assistance. Less than
one in four (23%) of caregivers of younger care recipients say they received some
paid help within the past year. Caregivers of younger care recipients also report
experiencing financial hardship as a result of being a caregiver (25% v 9% of
caregivers of older care recipients age 50+) and have requested information
about how to get financial help for the person they care for (35% v 22% of older
care recipients age 50+).
Summary and Conclusions
It is obvious that caregiving is primarily a family issue. It is often an
intergenerational family issue and most care recipients are older family
members. We also find that while both women and men are caregivers, the
intensity and length of the care they provide differs. Women provide more
hours of care, higher levels of care and feel they have less of a choice in taking on
the role compared to men. These factors increase a women’s risk for emotional
stress and lower quality of life.
We also find that mental illness is the main challenge for younger care recipients
ages 18-49. Three in ten younger care recipients have some mental illness,
PAGE 16
Caregiving in the U.S.
emotional illness or depression. One in four caregivers of older care recipients
say the person they care for has Alzheimer’s or other types of mental confusion.
This finding has a variety of implications including the ability of caregivers to
provide care at home over the course of the care recipients’ lifetime.
We have seen that the Level of Burden, having a choice to take on the role of
caregiver, and caregivers’ reported health status have the greatest influence on
whether caregivers perceive emotional stress, physical strain, or financial
hardship as a result of being caregivers. However, socio-economic factors such
as the amount caregivers spend on care recipients’ needs and caregivers’ lower
educational attainment appear to increase caregiver risk for financial hardship
for some caregivers. African-American and Hispanic caregivers appear to be
more disadvantaged as a result of these factors while Asian caregivers are more
protected from financial hardship as a result of having higher annual household
incomes (Figure 5).
We have also identified the types of help that caregivers say they most need. If
we are going to protect the health and well-being of caregivers who are at risk, it
is important to help them fulfill their needs so that they do not sacrifice
themselves in the service of others.
Figure 5: Fair or Poor Health Status
% of caregivers saying own health is fair or poor
87. How would you describe your own health? Is it excellent, very good, good, fair, or poor?
17%
All caregivers
35%
Level 5 caregivers
28%
Lower income (<$30K)
26%
Living with care recipient
Caregivers 50 or older
24%
Lower educated (HS or less)
24%
0%
20%
40%
60%
80%
100%
Base: 1,247 caregivers in the U.S.
Source: Caregiving in the U.S., National Alliance for Caregiving and AARP, 2004.
PAGE 17
Caregiving in the U.S.
IV. Detailed Findings
A. Prevalence of Caregiving in the United States
Two mechanisms were used to define and identify caregivers: a screening
question that probes for providing unpaid care in the past twelve months, and a
series of items identifying help with Activities of Daily Living (ADLs) and
Instrumental Activities of Daily Living (IADLs).
The following screening question was asked of randomly-selected respondents in
all households contacted, and was used as the first component in identifying the
presence of a caregiver in the household:
In the last 12 months, have you or anyone in your household provided
unpaid care to a relative or friend 18 years or older to help them take
care of themselves? Unpaid care may include help with personal needs
or household chores. It might be managing a person's finances,
arranging for outside services, or visiting regularly to see how they are
doing. This person need not live with you. (IF YES: IS THAT YOU OR
SOMEONE ELSE IN THE HOUSEHOLD?)
We asked all self-reported caregivers (those answering “yes” in the question
above) about whether they provide assistance with a list of ADLs and IADLs.
Respondents who did not report performing any of these activities were
excluded in any analysis or estimates.
See Detailed Methodology in Appendix A for a full explanation of the
procedures used for making population and household estimates.
PAGE 18
Caregiving in the U.S.
1. Population Estimates
We estimate 21% of the U.S. population age 18 and older provides unpaid care
to friends or relatives 18 and older. This translates into 44,443,800 caregivers in
the U.S.
ƒ
While the prevalence of caregiving among non-Hispanic whites and
African Americans is 21%, it is slightly lower among Asian-American and
Hispanic populations (18% and 16% respectively) see Table 1.
ƒ
We estimate 16% of the population, or 33,861,900 adults, provide unpaid
care to a recipient who is 50 or older.
ƒ
We estimate 5% of the population, or 10,581,900 adults, provide unpaid
care to a recipient 18-49.
2. Household Estimates
We estimate 21% of U.S. households contain at least one caregiver, reflecting
approximately 22,901,800 households (Table 2).
ƒ
The proportion of non-Hispanic white caregiving households (21% of all
non-Hispanic white households) and African-American caregiving
households (21% of all African-American households) reflect the overall
proportion of US caregiving households. Seventeen percent each of
Hispanic households and Asian-American households contain at least one
caregiver.
ƒ
We estimate 17%, or 18,539,500 households in the US, contain at least one
caregiver who provides care to someone age 50 or older.
ƒ
We estimate 4% of U.S. households, or 4,362,200 households contain a
caregiver of someone 18-49 years old.
PAGE 19
Caregiving in the U.S.
Table 1: Estimated Percent of Caregivers in U.S. and Within Each
Ethnic/Racial Group
Nat'l
White
Black
Hispanic
Asian
Caregivers
Caregivers of 50+
Caregivers of 18-49
21%
16%
5%
21%
17%
4%
21%
15%
6%
16%
12%
4%
18%
15%
3%
Caregiving households
With caregivers
helping 50+
With caregivers
helping 18-49
21%
21%
21%
17%
17%
17%
17%
15%
13%
14%
4%
4%
6%
4%
3%
Source: Caregiving in the U.S., National Alliance for Caregiving and AARP, 2004.
Table 2: Estimated Number of Caregivers in U.S. and Within Each
Ethnic/Racial Group13
Nat'l
White
Black
Hispanic
Asian
Caregivers
Caregivers of 50+
Caregivers of 18-49
44,443,800
33,861,900
10,581,900
32,337,000
26,177,500
6,159,400
5,119,900
3,657,100
1,462,800
3,734,200
2,800,700
933,600
1,527,500
1,272,900
254,600
Caregiving households
22,901,800
18,539,500
16,943,400
13,716,100
2,816,600
2,011,800
1,777,700
1,359,400
765,500
630,400
4,362,200
3,227,300
804,700
418,300
135,100
With caregivers
helping 50+
With caregivers
helping 18-49
Source: Caregiving in the U.S., National Alliance for Caregiving and AARP, 2004.
B. Profile of Caregivers
A typical caregiver in the U.S. is female (61%), approximately 46 years old, has
at least some college experience (66%), and spends an average of twenty hours
or more per week providing unpaid care to someone 50 or older (79%). A
13
All estimates have been rounded to the nearest 100.
PAGE 20
Caregiving in the U.S.
majority of caregivers are married, and most have juggled work with caregiving
responsibilities at some point during their role as caregiver.
1. Level of Burden
Our measure of Level of Burden is based upon an index derived from the
amount of time caregivers spend per week helping his or her care recipient and
the number / types of activities performed for the care recipient. 14 This
measure is important because we found that the greater the level of caregiver
burden, or intensity, the stronger the impact caregiving has on caregivers’
perceived health (regardless of age, gender, education or other factors).
The amount of time caregivers say they spend giving care ranges from less than
one hour a week to more than 40 hours per week. Furthermore, they provide a
variety of types of support ranging from no activities of daily living (ADL) to
more than four ADLs and three to five instrumental activities of daily living
(IADL). In order to measure intensity, the Level of Burden Index classified
caregivers into one of five levels.
Each successive level involves a higher degree of caregiving responsibility or
demand. “Level 1” caregivers perform no ADLs, and devote relatively few
hours per week providing care. “Level 5” caregivers reflect those with the
heaviest burden. They help with at least two ADLs and provide more than 40
hours per week of care. Table 3 shows the distribution of caregivers in this
study by Level of Burden.
Table 3: Caregivers by Level of Burden Index
Level 1
Level 2
Level 3
Level 4
Level 5
Total
33%
17
15
21
10
9+ hours per week
2%
59%
50%
100%
100%
Mean hours per week
3.5
9.8
12.0
33.1
87.2
Mean number of IADLs
3.1
4.0
4.3
5.2
5.9
Mean number of ADLs
0
.4
2.2
2.9
4.2
Base: 1,247 caregivers in the U.S.
Source: Caregiving in the U.S., National Alliance for Caregiving and AARP, 2004.
Table 4 shows caregiver demographics by Level of Burden.
14
Family Caregiving in the U.S. Findings from a National Survey: National Alliance for Caregiving and
AARP, 1997.
PAGE 21
Caregiving in the U.S.
Table 4: Caregiver Demographics by Level of Burden Index
Total
Male
Female
< 35 years old
35-49
50-64
65 or older
White
Black
Hispanic
Asian
Less than h.s.
High school grad
Some college
Technical school
College grad
Grad school +
<$30K
$30K-$49K
$50K-$99K
$100K+
Recipient 18-49
Recipient 50+
Lives in HH
< 1 hour
1 hour +
Primary care.
Secondary care.
Work full-time
Work part-time
Not employed
Excellent health
Very good health
Good health
Fair health
Poor health
39%
61
26%
32
30
13
73%
12
10
4
5%
29
27
3
22
13
24%
26
27
15
20%
79
24%
61
15
57%
39
48%
11
41
25%
30
28
12
5
Level 1
42%
58
25%
36
27
12
79%
8
8
4
3%
29
22
3
26
15
20%
28
29
16
24%
75
9%
76
15
54%
39
53%
10
37
29%
30
29
8
4
Level 2
45%
55
34%
29
28
9
73%
16
8
4
6%
30
24
2
20
18
24%
28
28
12
24%
75
21%
66
13
51%
45
53%
10
37
26%
31
23
12
8
Level 3
40%
60
33%
32
25
10
71%
13
12
4
5%
24
27
3
29
12
25%
18
30
19
11%
86
14%
67
18
44%
53
48%
10
42
25%
36
24
12
3
Level 4
34%
66
23%
33
32
12
64%
17
14
5
8%
28
32
4
17
10
27%
28
22
18
20%
79
35%
54
11
67%
33
47%
13
40
23%
30
33
11
3
Level 5
29%
71
12%
28
38
22
76%
8
13
3
9%
35
29
2
19
6
34%
22
25
8
13%
87
65%
18
17
80%
19
33%
10
57
21%
24
21
24
11
Base: 1,247 caregivers in the U.S. Source: Caregiving in the U.S., National Alliance for Caregiving and AARP, 2004
PAGE 22
Caregiving in the U.S.
2. Gender
While the majority of caregivers are female, a substantial proportion of
caregivers are men (Figure 6).
ƒ
Female caregivers are more likely to provide care at the highest Level of
Burden (71% Level 5 v 58% Level 1). Male caregivers are more likely to
provide care at the lowest Levels of Burden 42% Level 1 v 29% Level 5).
ƒ
Male caregivers are more likely to be Asian than any other ethnic
background surveyed (54% v 38% white, 33% African-American, 41%
Hispanic).
Figure 6: Gender of Caregivers
39%
61%
Women
Men
Base: 1,247 caregivers in the U.S.
Source: Caregiving in the U.S., National Alliance for Caregiving and AARP, 2004.
PAGE 23
Caregiving in the U.S.
3. Age
The average age of caregivers is 46. More than half of all caregivers are between
the ages of 18-49 years (Figure 7).
Figure 7: Age of Caregivers
Q. Just to be sure I speak to people of all ages, how old were you on your last birthday?
26%
18-34 years
32%
35-49 years
30%
50-64 years
13%
65+ years
0%
20%
40%
60%
80%
100%
Base: 1,247 caregivers in the U.S.
Source: Caregiving in the U.S., National Alliance for Caregiving and AARP, 2004.
ƒ
Minority caregivers are more likely to be between the ages of 18-34 than
caregivers of any other ethnic group surveyed (35% African-American,
33% Hispanic, 38% Asian v 22% white). Conversely, white caregivers are
more likely to be age 65+ than African-American or Asian caregivers (15%
v 5% African-American, 8% Asian). This undoubtedly reflects socioeconomic factors leading to a longer lifespan among the white sub-group.
ƒ
A greater proportion of Level 5 caregivers are age 50 or older compared to
Level 1 caregivers (60% v 39%).
ƒ
Younger caregivers tend to provide assistance to younger care recipients.
For example, caregivers 18-34 years are more likely to care for someone
age 18-49 than someone age 50+ (42% v 22%). Caregivers age 50-64 and
65+ are more likely to care for someone age 50+ than someone 18-49 (32%
v 19% and 13% v 9% respectively).
PAGE 24
Caregiving in the U.S.
Table 5: Demographic Profile of Caregivers by Race
Gender
Male
Female
Age of caregiver
18-34
35-49
50-64
65 or older
Mean (years)
Marital status
Married/living with partner
Single, never married
Separated/divorced
Widowed
Children in household
Yes
No
Educational attainment
Less than high school
High school grad
Some college
Technical school
College grad
Grad school +
Current employment
Employed full-time
Employed part-time
Not employed
Household income
<$15K
$15K-$30K
$30K-$50K
$50K-$75K
$75K-$100K
$100K+
Total
White
Black
Hispanic
Asian
39%
61
38%
62
33%
67
41%
59
54%
46
26%
32
30
13
46 yrs
22%
32
31
15
48 yrs
35%
36
24
5
41 yrs
33%
33
24
10
43 yrs
38%
27
27
8
42 yrs
62%
18
14
6
65%
14
14
7
44%
32
18
6
57%
23
16
4
61%
28
5
3
37%
62
35%
65
53%
47
39%
61
34%
58
5%
29
27
3
22
13
4%
29
27
3
22
14
10%
29
27
3
22
8
8%
34
29
2
22
5
6%
12
19
1
36
25
48%
11
41
49%
11
39
51%
7
41
41%
11
46
44%
8
48
8%
17
26
18
9
15
7%
16
25
17
9
16
9%
20
30
18
6
9
12%
20
28
21
8
9
9%
10
17
17
18
17
Base: 1,247 caregivers in the U.S.
Source: Caregiving in the U.S., National Alliance for Caregiving and AARP, 2004.
PAGE 25
Caregiving in the U.S.
4. Family Make Up
More than six in ten caregivers are married or living with a partner, nearly two
in ten are single, fewer are divorced or separated, and widowed (Figure 8).
Figure 8: Marital Status of Caregivers
Q89. Are you currently: married, living with a partner, widowed, separated, divorced, or single,
that is, never been married?
6%
14%
Married/living with partner
Single
62%
18%
Divorced or separated
Widowed
Base: 1,247 caregivers in the U.S.
Source: Caregiving in the U.S., National Alliance for Caregiving and AARP, 2004.
ƒ
African-American caregivers are more likely to be single-never married
than white and Hispanic caregivers (32% v 14% white, 23% Hispanic).
Thirty-seven percent of all caregivers report a child under age 18 living in the
household, and:
ƒ
ƒ
ƒ
ƒ
Caregivers ages 18 to 34 (52%), and 35 to 49 (57%) are more likely to have
a child under age 18 than caregivers 50-64 years (17%) or 65+ (2%);
African-American caregivers (53%) compared to all other ethnic subgroups (35% white, 39% Hispanic, 34% Asian);
Those reporting excellent health (44%) compared to those who say their
health is good (35%), fair / poor (34%);
Secondary caregivers (43%) v primary caregivers (32%); Level 1 through 4
caregivers (37%, 44%, 38%, and 36% respectively) v Level 5 (26%).
PAGE 26
Caregiving in the U.S.
5. Education
Caregiving is spread almost equally across all educational groups (Figure 9).
Although we do not have exactly comparable data for the adult population, we
know that less than one in five (17%) people age 18 and older say they completed
the eighth or ninth grade, nearly one in three (32%) say they have completed
high school, another one in five (19%) say they have some college but did not
earn a degree, about eight percent say they earned an associate’s degree and
sixteen percent say they earned a bachelor’s degree.15
Figure 9: Education of Caregivers
Q94. What is the last grade of school you completed?
35%
College +
30%
Some college
29%
High school
0%
20%
40%
60%
80%
100%
Base: 1,247 caregivers in the U.S.
Source: Caregiving in the U.S., National Alliance for Caregiving and AARP, 2004.
ƒ
However, one third of the youngest caregivers (18-34 years, 33%) and
oldest caregivers (65+, 35%) say the last grade of school they completed
was high school.
ƒ
Caregivers who are high school graduates are more likely to say they
provide 21 hours or more of care per week than 0-8 hours per week (33% v
26%). These caregivers are more likely to live in rural than urban, or
suburban settings (36% rural, 26% urban, 25% suburban).
15
U.S. Census Bureau, www.census.gov/population/socdemo/education/ppl-169/tab11.txt. Table 11.
Educational Attainment of People 18 Years and Over, by Metropolitan and Nonmetropolitan Residence,
Age, Sex, Race, and Hispanic Origin: March 2002.
PAGE 27
Caregiving in the U.S.
ƒ
Not surprisingly, education levels and annual household income are
connected among our caregivers. Four in ten (42%) caregivers who are
high school graduates report an annual household income of $30,000 or
less. More than a third (36%) of caregivers who are college graduates
report an annual household income of $100,000 or more. Three in ten
(31%) caregivers who complete graduate work report an annual
household income of $100,000.
ƒ
Caregivers who completed a college degree or graduate work are more
likely to live an hour or more away from the person they care for than to
live near or with the person they care for. For example, among college
graduates one third (33%) live one hour or more away from their care
recipient compared to one in five for those that co-reside (19%) or live less
than an hour away (21%). Among those with graduate work, one in five
live one or more hours away (20%) compared to one in ten of those who
co-reside (10%), and 13% who live less than an hour away.
ƒ
Asian-American caregivers are the most educated of the racial/ethnic
groups, with six in ten (61%) having a college degree or higher. Among
white caregivers, 36% have a college degree or higher compared with 30%
of African-American caregivers and 27% of Hispanic caregivers.
6. Income
Figure 10 shows the distribution of caregivers by reported annual household
income. The median household income of caregivers is an estimated $37,312,
and among those providing care to someone 50 or older, the median income is an
estimated $38,125.16
The median was calculated using the mid-point of each income category (see Q95 in questionnaire) and
$125,000 for those falling into the $100,000 or higher category.
16
PAGE 28
Caregiving in the U.S.
Figure 10: Income of Caregivers
Q95. Last year, what was your total annual household income from all sources, before taxes?
24%
<$30K
26%
$30-49K
27%
$50-99K
15%
$100K+
0%
20%
40%
60%
80%
100%
Base: 1,247 caregivers in the U.S.
Source: Caregiving in the U.S., National Alliance for Caregiving and AARP, 2004.
ƒ
Slightly more than half of Asian-American caregivers (53%) and four in
ten white caregivers (42%) report household incomes of $50,000 or more.
Only one-third of African-American caregivers (33%) and 37% of Hispanic
caregivers report the same.
ƒ
Four in ten (43%) caregivers helping someone age 50+ report an annual
household income of $50,000 or more. One in three (35%) caregivers
helping someone 18-49 years reports an annual household income of
$50,000 or more.
PAGE 29
Caregiving in the U.S.
7. Employment Status
Nearly six in ten caregivers are currently employed (59%). Some are employed
full-time and some are employed part-time. Those currently unemployed are
most likely to be retired or homemakers (Figure 11).
Figure 11: Employment Status of Caregivers
Q39. Now I have a few questions about you. Are you currently working full time, working part
time, a student, disabled, retired, a homemaker, unemployed and looking for work, or something
else?
48%
Employed full time
11%
Employed part time
16%
Retired
9%
Homemakers
0%
20%
40%
60%
80%
100%
Base: 1,247 caregivers in the U.S.
Source: Caregiving in the U.S., National Alliance for Caregiving and AARP, 2004.
ƒ
Male caregivers are more likely to be employed full-time than female
caregivers (60% v 41%).
ƒ
Caregivers between the ages of 35-49 are more likely to be working fulltime than caregivers 18-34 years, 50-64 years or 65+ (64% 35-49 years, 52%
18-34 years, 48% 50-64 years 3% 65+).
ƒ
Caregivers of those under age 50 are more likely to be working full or
part-time than those caring for someone over age 50 (66% v 57%).
ƒ
Caregivers who live more than an hour away from those they care for are
much more likely to be working full-time than caregivers who live with
the person they care for (63% v 39%).
PAGE 30
Caregiving in the U.S.
ƒ
Caregivers with the heaviest caregiving responsibility are less likely to be
employed and more likely to be retired than caregivers with less
caregiving responsibility. For example, one in three Level 5 caregivers is
employed full-time compared to almost half or more at other Levels of
Burden (33% Level 5 v 53% Level 1, 53% Level 2, 48% Level 3, 47% Level
4). Close to three in ten (27%) Level 5 caregivers are retired compared
much smaller proportions of caregivers at the other Levels of Burden (15%
Level 1, 14% Level 2, 11% Level 3, 15% Level 4).
Table 6: Employment Status by Age and Other Characteristics
Q39. Are you currently working full time, working part time, a student, disabled, retired, a
homemaker, unemployed and looking for work, or something else?
Employed full time
Total
48%
Male
Female
60%
41%
White
African American
Hispanic
Asian American
49%
51%
41%
44%
18-34
35-49
50-64
65 or older
52%
64%
48%
3%
Recipient age 18-49
Recipient age 50+
54%
47%
Recipient lives in household
< 1 hour away
1 hour + away
39%
48%
63%
Level 1 caregivers
Level 5 caregivers
53%
33%
Base: 1,247 caregivers in the U.S.
Source: Caregiving in the U.S., National Alliance for Caregiving and AARP, 2004.
PAGE 31
Caregiving in the U.S.
8. Military Status
While only 14% of caregivers report having served on active duty in the armed
forces, 33% of male caregivers report having served. No significant differences
emerge across racial/ethnic subgroups. Almost one in five (17%) care recipients
served in the U.S. armed forces. One in five (19%) care recipients who served in
the U.S. armed forces is age 50 or older.
C. Characteristics of Caregiving Situation
1. Number of Recipients
While most caregivers say they care for one person, two in ten caregivers say
they care for two people. Few caregivers say they help three or more people
(Figure 12).17
Figure 12: Number of Care Recipients
Q1. How many adults [do you provide this care for? / did you provide this care for in the past
12 months?]
69%
One
22%
Two
8%
Three or more
0%
20%
40%
60%
80%
100%
Base: 1,247 caregivers in the U.S.
Source: Caregiving in the U.S., National Alliance for Caregiving and AARP, 2004.
ƒ
Older caregivers are more likely to say they provide care for one person
compared to younger caregivers. For example, more than eight in ten
Interviewers asked those who provide care to more than one recipient to answer all questions based on
the recipient for whom he/she provides the most care.
17
PAGE 32
Caregiving in the U.S.
(83%) caregivers’ age 65+ care for one person compared to caregivers 1834 years (62%), 35-49 years (68%) or 50-64 years (71%).
2. Duration of Care
The average duration of caregiving is 4.3 years. About three in ten caregivers
say they have provided care for more than five years, another three in ten say
they have provided care for one to five years. One-third say they have cared for
the recipient for less than one year and fewer say they have been providing care
“occasionally” (Figure 13).
Figure 13: Duration of Care for Recipient
Q13. For how long [have you been providing/did you provide] help to your (__)? PROMPT:
Your best estimate is fine.
5%
Occasionally (vol.)
34%
<1 year
31%
1-4 years
29%
5+ years
0%
20%
40%
60%
80%
100%
Base: 1,247 caregivers in the U.S.
Source: Caregiving in the U.S., National Alliance for Caregiving and AARP, 2004.
ƒ
Older caregivers are more likely to say they have been providing care for
10 years or more compared to younger caregivers (17% of caregivers 50-64
years and 18% of caregivers 65+ v to 9% of caregivers 18-34 years). These
older caregivers tend to be caring for parents and spouses.
ƒ
Conversely, younger caregivers are more likely to say they have been
providing care for less than six months compared to older caregivers (22%
of caregivers 18-34 years v 13% of caregivers 50-64 years and 11% of
caregivers 65+).
PAGE 33
Caregiving in the U.S.
D. Recipients of Care
The typical care recipient in the U.S. is female, widowed, and approximately 66
years old. Most are cared for by a relative. The majority of recipients either live
in the same household as the caregiver or less than an hour away.
1. Relationship between Caregiver and Recipient
More than eight in ten caregivers say they provide care for relatives. Fewer say
they provide care to friends or non-family members (Figure 14). Mothers are the
most frequently cared for family member (28%).
Figure 14: Relationship between Caregiver and Care Recipient
Q1b. What [is/was] this person’s relationship to you?
17%
Relatives
Non-relatives
83%
Base: 1,247 caregivers in the U.S.
Source: Caregiving in the U.S., National Alliance for Caregiving and AARP, 2004.
ƒ
Caregivers at higher levels of burden are more likely to say they help a
family member than caregivers at lower levels of burden (89% of Level 5
caregivers help a family member v 76% of Level 1 caregivers).
ƒ
Looking at caregivers across age categories, we find middle aged and late
middle aged caregivers say they are more likely to be caring for their
mother than the youngest and oldest caregivers (33% age 35-49 and 35%
age 50-64 v 21% age 18-34 and 16% age 65+). Older caregivers are more
PAGE 34
Caregiving in the U.S.
likely to say they are caring for a spouse than caregivers at other ages
(22% 65+ years v 1% ages 18-34, 3% ages 35-49, and 8% ages 50-64).
ƒ
African-American caregivers are more likely to say they help an aunt or
uncle than whites or Hispanics (11% v 4% and 3%). Asians and Whites
are more likely to say they provide care for a father than AfricanAmericans (13% and 9% v 4%).
ƒ
Caregivers who say the person they care for is under age 50 tend to be
parents or siblings of the recipient, whereas caregivers who say they help
someone age 50+ tend to be the son or daughter of the recipient (Table 7).
Table 7: Care Recipient by Age (Top Mentions)
1b. What [is/was] this person’s relationship to you?
Total
Recipients 50+
Recipients 18-49
Relatives (Net)
83%
85%
74%
Mother
28%
34%
7%
Grandmother
9
11
*
Father
8
10
3
Mother in law
7
8
1
Spouse
6
6
6
Sibling
5
4
20
Daughter/Son
6
1
27
Non-relative (Net)
17
14
25
Base: 1,247 caregivers in the U.S.
Source: Caregiving in the U.S., National Alliance for Caregiving and AARP, 2004.
PAGE 35
Caregiving in the U.S.
2. Care Recipient Demographics
Almost two-thirds of care recipients are female (65%), and three in ten are men
(31%). There is a tendency to become the caregiver of someone who is the same
gender as the care recipient.
ƒ
Female caregivers are slightly more likely than male caregivers to care for
women (68% v 60%), and male caregivers more than female caregivers
tend to care for men (35% v 28%).
ƒ
Caregivers 65 or older tend to be helping men more often than younger
caregivers (42% v 28% of caregivers 18-34) – whereas many caregivers
under 65 are helping women (e.g., 67% of caregivers 18-34).
A typical care recipient is female (65%) and widowed (42%). Twenty percent of
care recipients are 18 to 49, 16% are 50 to 64, 19% are 65 to 74, 24% are 75 to 84,
and 20% are 85 or older (Figure 15).
Figure 15: Age of Care Recipient
Q3. How old [is/was] your (__)? PROMPT: Your best estimate is fine.
20%
18-49
79%
50+
20%
18-49
16%
50-64
19%
65-74
24%
75-84
20%
85+
0%
20%
40%
60%
80%
100%
Base: 1,247 caregivers in the U.S.
Source: Caregiving in the U.S., National Alliance for Caregiving and AARP, 2004.
PAGE 36
Caregiving in the U.S.
ƒ
The average age of recipients 18 to 49 years old is 33, whereas for those 50
or older, the average age is 75.
ƒ
African-American caregivers are more likely to be helping a recipient
under 50, than white caregivers (27% compared to 21%).
A plurality of care recipients are widowed (42%), while 27% are still married,
14% single, and 15% divorced or separated.
ƒ
African-American caregivers more than others care for recipients who are
single (31%).
3. Health of Care Recipient
a. Main problem or illness of care recipient
The incidence of primary illness or problem reported by caregivers varies by age.
Among caregivers who say they help someone under age 50, the most commonly
reported problem is mental or emotional illness. Among caregivers who say
they help someone age 50+, aging or being old is the most commonly reported
problem (Figure 16).
PAGE 37
Caregiving in the U.S.
Figure 16: Main Problems or Illnesses Identified by Caregiver
Q11b. What would you say [is/was] the main problem or illness your [care recipient] has/had?
Old age
12%
0%
15%
Cancer
4%
Diabetes
4%
9%
8%
9%
7%
Mental illness
7%
1%
9%
0%
8%
5%
3%
6%
Mobility
5%
3%
6%
0%
Blindness/vision
0%
Total
6%
Stroke
Arthritis
23%
3%
Heart disease
Alzheimer's
8%
Recipient 18-49 years old
Recipient 50+
4%
5%
3%
2%
3%
10%
20%
30%
40%
50%
Base: 1,247 caregivers in the U.S.
Source: Caregiving in the U.S., National Alliance for Caregiving and AARP, 2004.
ƒ
Asian-American caregivers are more likely to say old age or being old is
the main illness or problem the person they care for has compared to
White, African-American, and Hispanic caregivers (23% v 12%, 10%, 9%).
ƒ
Hispanic caregivers are more likely to report diabetes as a main illness the
person they care for has compared to White or Asian caregivers (14% v
7%, 7%).
ƒ
Level 4 caregivers are more likely to say they are caring for someone who
has cancer than Level 1, 2, or 3 caregivers (14% v 4%, 7%, 6%). Level 5
caregivers are also more likely to say they are caring for someone who has
PAGE 38
Caregiving in the U.S.
cancer compared to Level 1, 2, or 3 caregivers (15% v 4%, 7%, 6%). Level
5 caregivers are also more likely to say they are caring for someone who
had a stroke than Level 1, 2, and 3 caregivers (14% v 3%, 4%, 5%).
ƒ
Level 1, 2, and 3 caregivers are more likely to report old age or being old
as their care recipient’s main problem compared to Level 4 and 5
caregivers (18%, 13%, 15% v 6%, 5%).
When we asked caregivers an open-ended question about the main problem or
illness the person they care for has, only six percent of caregivers say it is
Alzheimer’s or dementia. However, we asked caregivers who did not identify
Alzheimer’s or dementia a closed-ended follow-up question which specifically
asked whether the person they care for has Alzheimer’s or other mental
confusion. An additional 17% of caregivers say yes to this question. Taken
together, 23% of caregivers report providing care to someone with Alzheimer’s,
dementia, or other mental confusion.
ƒ
Caregivers who say they care for someone who has Alzheimer’s, dementia
or other confusion provide more than 20 hours of care per week (29%) and
are Level 3, 4, and 5 caregivers (36%, 26%, and 32% respectively).
PAGE 39
Caregiving in the U.S.
b. Medication management
Most caregivers say the person they care for takes prescription medicine. Older
care recipients are more likely to take prescription medicine than younger care
recipients (Figure 17.)
Figure 17: Percentage of Care Recipients Taking Medication
Q28. [Does/Did] your (__) take any prescription medicine?
85%
Total
Care recipients age
18-49
60%
Care recipients 50 or
older
92%
0%
20%
40%
60%
80%
100%
Base: 1,247 caregivers in the U.S.
Source: Caregiving in the U.S., National Alliance for Caregiving and AARP, 2004.
Female caregivers are more likely to say the person they take care of uses
prescription medications than male caregivers (87% v 82%). Caregivers who
assist older care recipients are more likely to say the care recipient uses
prescription medications than caregivers who assist younger care recipients (92%
of care recipients 50+ v 60% of care recipients ages 18-49).
Of caregivers whose recipient takes prescription medicine, 45% say the person
they care for needs someone to oversee or manage taking medicine, while 55%
say the person they care for manages on their own.
ƒ
Caregivers who assist those with Alzheimer’s or dementia say the person
they care for needs help with their prescription medications (75% v 34%).
ƒ
The greater the caregiver Level of Burden, the more likely the caregiver is
to say the person they take care of needs help with their prescription
medications such as taking the right amount on time. This is especially
PAGE 40
Caregiving in the U.S.
the case for Level 5 compared to caregivers at other levels (75% v 24% at
Level 1, 37% at Level 2, 52% at Level 3, and 59% at Level 4).
Three in four (76%) caregivers who care for someone who takes prescription
medicine feel that they know as much as they need to know about the
prescription medicine their care recipient takes.
ƒ
However, African-American and Hispanic caregivers are more likely than
white caregivers to say they need to know more about the prescription
medicines their care recipient takes (28% and 29% v 20%).
ƒ
Secondary caregivers are more likely than primary caregivers to say they
need to know more about the prescription medicines their care recipient
takes (26% v. 18%).
ƒ
Caregivers who spend relatively little time with their care recipient are
more likely than those who spend more time with their care recipient to
feel a need to know more about the prescription medicines their care
recipient takes (27% of those spending less than nine hours per week v
17% of those spending nine or more hours).
PAGE 41
Caregiving in the U.S.
4. Living arrangements
Three in ten (29%) caregivers say they live in an urban area or rural area, and
nearly four in ten (39%) caregivers say they live in a suburban area.
Most caregivers live in close proximity to the person they provide care. Onequarter of caregivers report the recipient living in their household, four in ten say
they live within 20 minutes of the recipient, two in ten live between twenty
minutes and one hour away, and few are a one to two hour drive or more away
(Figure 18).
Figure 18: Distance of Caregiver to Recipient
Q4. [Does/Did] your (__) live in your household, within twenty minutes of your home, between
20 minutes and an hour from your home, a one to two hour drive from your home, or more than
two hours away?
24%
In house
42%
Within 20 minutes
19%
20 minutes-1 hour
5%
1-2 hours
10%
2 hours +
0%
20%
40%
60%
80%
100%
Base: 1,247 caregivers in the U.S.
Source: Caregiving in the U.S., National Alliance for Caregiving and AARP, 2004.
Caregivers who tend to live with the recipient (24% overall) include:
ƒ
ƒ
ƒ
ƒ
ƒ
ƒ
Level 5 caregivers (65% v 9% Level 1, 21% Level 2, 14% Level 3, 35% Level
4);
Older caregivers (44% of 65+ v 16% 18-34 years, 18% 35-49 years, 29% 5064 years);
Caregivers whose own health is only fair or poor (36% v 18% who rate
health excellent);
Primary caregivers (35% v 9% secondary caregivers);
Hispanics (34% v 22% white);
Those who help younger recipients (33% of 18-49 v 22% 50+);
PAGE 42
Caregiving in the U.S.
ƒ
ƒ
Those who are not employed while caregiving (33% v 22% employed);
and
Lower income (27% less than $30, 000 v 18% of $100,000).
Long-distance caregivers, i.e., those who live more than one hour away (15%
overall), tend to be:
ƒ
ƒ
ƒ
ƒ
ƒ
College educated (23%);
Upper income (19% of those earning $100,000+);
Secondary caregivers (22% v 11% primary);
Those in excellent health (19%); and
Age 35-49 and 50-64 (18% and 15% respectively).
Overall, one-third (33%) of care recipients live in an urban setting, more than a
third (38%) live in a suburb, and about one in four (27%) live in a rural area.
More than half of care recipients live in their own home. One in four care
recipients lives with their caregiver and fewer live in other settings (Figure 19).
Figure 19: Living Arrangements of Care Recipient
Q6. IF NOT IN HOUSEHOLD, DK, OR REF IN Q4: [Does/Did] your (__) live in: his or her own
home, someone else’s home, an independent living or retirement community, in an assisted
living facility where some care may be provided, a nursing home or facility, somewhere else?
55%
Own home
24%
In caregiver's household
8%
Someone else's home
Nursing home
5%
Assisted living
4%
Independent living or retirement
3%
0%
20%
40%
60%
80%
100%
Base: 1,247 caregivers in the U.S.
Source: Caregiving in the U.S., National Alliance for Caregiving and AARP, 2004.
ƒ
Care recipients who live in a nursing home are more likely to be older (8%
age 50+ v 1% age 18-49) and to live in an urban setting rather than in the
suburbs (10% v 4%). Care recipients who live in an assisted living facility
PAGE 43
Caregiving in the U.S.
are more likely to have an older caregiver (8% age 50-64 and 12% 65+ v
3% age 18-34).
E. Intensity of Caregiving: Hours of Care Provided and
Activities Performed
The intensity of the caregiving experience varies in terms of the amount of time
spent giving care and the kinds of care provided. More than half of caregivers
visit their recipient at least once a week, and a majority of caregivers perform
three or more IADLs. While assisting with ADLs is less common, fully half of
caregivers help with these tasks.
1. Hours of Care and Frequency of Visits
Almost half of caregivers report spending more than eight hours per week
helping the relative or friend for whom they provide care. Almost one in four
spend nine to 20 hours per week providing care; a minority spend 21 to 39 hours
per week, and almost one in five report providing 40 or more hours or “constant
care” (Figure 20).
Figure 20: Hours of Care Provided Per Week
Q27. Thinking now of all the kinds of help you [provide/provided] for your (__), about how
many hours [do/did] you spend in an average week, doing these things?
17%
40+ hours
8%
21-39 hours
23%
9-20 hours
48%
8 hours or less
0%
20%
40%
60%
80%
100%
Base: 1,247 caregivers in the U.S.
Source: Caregiving in the U.S., National Alliance for Caregiving and AARP, 2004.
PAGE 44
Caregiving in the U.S.
ƒ
There is no significant difference in the average (mean) number of hours
caregivers spend providing care by race.
Caregivers who provide 40 hours or more per week (17% overall) tend to be:
ƒ
ƒ
ƒ
ƒ
ƒ
ƒ
Living with the care recipient (44% v 7% living less than an hour away,
16% one hour or more away);
In fair or poor health (29% v 16% excellent health, 15% very good health);
65 or older (28% v 11% 18-34, 15% 35-49);
Caring for someone with Alzheimer’s or dementia (24%v 16%);
Lower income (23% of those earning less than $30,000 v 16% $30,00049,000, 15% $50,000-99,000, 12% $100,000); and
Less well educated (21% of those with a high school education or less v
12% college graduate).
Those spending eight hours or less per week (48% overall) include:
ƒ
ƒ
ƒ
Male caregivers (54% v 44% women);
Employed caregivers (52% v 39% not employed); and
White (51%) and Asian-American (48%) caregivers.
Nearly three in four caregivers who do not co-reside with the person they care
for, say they visit one or more times each week. One in ten say they visit a few
times a month, and few say they only visit about once per month or less (Figure
21).
Figure 21: Number of Visits to Care Recipient
Q5. IF NOT IN HOUSEHOLD: On average, how often [do/did] you visit your (__)? More than
once a week, once a week, few times a month, once a month, few times a year, or less often?
74%
Once a week or more
11%
Few times a month
5%
Once a month
7%
Few times a year
2%
Less often
0%
20%
40%
60%
80%
100%
Base: 924 caregivers in the U.S. not living with care recipient.
Source: Caregiving in the U.S., National Alliance for Caregiving and AARP, 2004.
PAGE 45
Caregiving in the U.S.
Among caregivers who do not co-reside with the person they care for, more than
half (56%) say they visit more than once a week. These caregivers can be
described as:
ƒ
ƒ
ƒ
ƒ
ƒ
ƒ
ƒ
ƒ
ƒ
Level 4 (82%) and Level 5 (72%) caregivers (v 45% Level 1);
Those in fair or poor health (72% v 48% in excellent health, or 55% in very
good health);
African-American caregivers (65%) more than white (55%) or Asian (44%)
caregivers; Hispanics fall in the middle (54%);
Lower income (65% of those earning less than $30,000 v 48% $50,00099,000, 53% $100,000+);
Those living less than an hour away (65% v 16% one hour or more);
Primary caregivers (63% v 49% secondary caregivers);
Those not employed while providing care (63% v 53% employed);
Less well educated (62% of those without a college degree v 45% with a
college degree); and
Caregivers in urban areas (61% v 50% suburban).
2. Activities Performed
a. Instrumental Activities of Daily Living (IADLs): Managing Everyday
Living
Number of IADLs. Because of the way we defined caregiving, our caregivers
seldom perform only one or two tasks for the person they help. To qualify as a
caregiver in this study, a person must perform at least one IADL or ADL. Using
this definition, 100% of caregivers report performing at least one IADL for their
care recipients, and fully 80% of caregivers provide help with three or more
IADLs (Table 8). Across demographic subgroups, we find that caregivers who
perform three or more IADLs are likely to:
ƒ
ƒ
ƒ
ƒ
live with the person they care for (95% v 73% less than one hour away,
84% one hour or more away),
report fair or poor health (89% v 76% excellent health, 80% very good
health);
be African-American (88% v 78% of white, 79% of Asian-American, and
82% of Hispanic caregivers); and
be female (83%v 76% male).
PAGE 46
Caregiving in the U.S.
Table 8: Performance of ADLs & IADLs:
Total and by Level 1, Level 4, and Level 5 Caregivers
Q14-Q19. I’m going to read a list of kinds of help, which might be provided to a person, if the
person cannot do this by him or herself. For each, just tell me if you [provide/provided] this kind
of help. [Do/Did] you help your (__)....Q20-Q26. [Do/Did] you provide help for your (__) with:
Total
Level 118
Level 4
Level 5
Transportation
82%
73%
90%
95%
Grocery shopping
75%
65%
85%
94%
Housework
69%
47%
85%
94%
Managing finances
64%
60%
72%
76%
Preparing meals
59%
32%
79%
97%
Giving medicines
41%
13%
65%
85%
Arranging services
30%
16%
45%
51%
Three or more IADLs
80%
63%
93%
100%
None of these IADLs
*
--
--
--
In/out of bed and chairs
36%
--
67%
83%
Dressing
29%
--
61%
88%
Bathing
26%
--
51%
83%
Toileting
23%
--
47%
68%
Feeding
18%
--
30%
44%
Continence/diapers
16%
--
29%
53%
Three or more ADLs
26%
--
53%
84%
None of these ADLs
50%
100%
9%
--
IADLs
ADLs
Base: 1,247 caregivers in the U.S.
Source: Caregiving in the U.S., National Alliance for Caregiving and AARP, 2004.
By definition, Level 1 caregivers perform one or more IADLs, but no ADLs. See Detailed Methodology for
a full description of the Level of Burden Index.
18
PAGE 47
Caregiving in the U.S.
Types of IADLs. Caregivers most frequently report arranging transportation
(either by driving the care recipient, or helping to get transportation), grocery
shopping, housework (such as doing dishes, laundry, or straightening up), and
managing finances such as paying bills, or filling out insurance claims (Figure
22).
Figure 22: Helping with IADLs
% saying yes
Q20-26. [Do/Did] you provide help for your (__) with:
82%
Transportation
75%
Grocery shopping
69%
Housework
64%
Managing finances
59%
Preparing meals
41%
Helping with medication
30%
Managing services
0%
20%
40%
60%
80%
100%
Base: 1,247 caregivers in the U.S.
Source: Caregiving in the U.S., National Alliance for Caregiving and AARP, 2004.
ƒ
Few gender differences emerge among types of IADLs, with the exception
that women are more likely than men to help with housework (72% v
64%) and preparing meals (62% v 53%).
ƒ
A higher proportion of African-American and Hispanic caregivers assist
with giving medicines (48% and 46%) than white (39%) or AsianAmerican (32%) caregivers.
ƒ
Younger caregivers are more likely to help with housework and less likely
than their older counterparts to arrange outside services. For example,
eight in ten (79%) of those 18-34 years say they help with housework (v
69% 35-49 years, 64% 50-64 years, 58% 65+). Younger caregivers are less
likely to arrange outside services than their counterparts (18% 18-34 v
31% 35-49, 37% 50-64, 32% 65+).
PAGE 48
Caregiving in the U.S.
ƒ
Younger caregivers are also less likely to help manage finances such as
paying bills or filling out insurance claims (54% 18-34 v 68% 35-49, 67%
50-64, 69% 65+).
Income and education relate to the types of IADLs performed, due in part
perhaps to the fact that higher income and upper-educated caregivers live farther
away from recipients than other caregivers.
ƒ
Lower income and less educated caregivers tend to provide more help
than their counterparts with every day practical tasks such as grocery
shopping, housework, and help with preparing meals.
ƒ
Those with higher incomes and more education tend to help with
arranging outside services from agencies. Upper income caregivers are
also more likely than those with less income to assist with managing
finances.
b. Activities of Daily Living (ADLs): Personal Care
Number of ADLs. Half of all caregivers (50%) perform the difficult tasks
involved in assisting with ADLs.
Those most likely to help with at least one ADL include:
ƒ
ƒ
ƒ
ƒ
Caregivers providing more than eight hours of help per week (81% of 21+
hours and 54% of 9-20 hours, whereas only 33% of those who give less
than nine hours per week perform at least one ADL);
Those who provide care to recipients with Alzheimer’s or dementia (62%
v 47%);
Caregivers living with the recipient (e.g., 61% v 46% of those who live less
than an hour away); and
Caregivers whose recipient is 50 or older (55% v 33% of those caring for
18-49 year olds).
One-quarter of caregivers (26%) provides assistance with three or more ADLs.
Many of the same subgroups of caregivers as above are more likely to provide
three or more ADLs:
ƒ
ƒ
ƒ
Level 4 (53%) and Level 5 (84%) caregivers (v 36% Level 3);
Those devoting more than 20 hours per week of care (55% v 11% for those
providing 0-8 hours per week);
Caregivers living with the recipient (36% v 20% of those living with one
hour);
PAGE 49
Caregiving in the U.S.
ƒ
ƒ
ƒ
Those helping someone with Alzheimer’s, dementia, or other confusion
(36%v 23% not helping someone with Alzheimer’s, or other confusion);
More likely to say they use outside resources (34% v 18%)
Women (28% v 22% men).
Types of care. The most commonly performed ADLs are helping the care
recipient to get in and out of bed and chairs, to get dressed, and with personal
grooming (Figure 23).
Figure 23: Helping with ADLs
% saying yes
Q14-19. I’m going to read a list of kinds of help, which might be provided to a person, if the
person cannot do this by him or herself. For each, just tell me if you [provide/provided] this
kind of help. [Do/Did] you help your (__)...
36%
Getting in and out of beds and chairs
29%
Getting dressed
26%
Helping bathe or shower
23%
Getting to and from the toilet
18%
Feeding care recipient
16%
Dealing with incontinence or diapers
0%
20%
40%
60%
80%
100%
Base: 1,247 caregivers in the U.S.
Source: Caregiving in the U.S., National Alliance for Caregiving and AARP, 2004.
ƒ
Female caregivers are more likely than males to help with the personal
activities of getting dressed (33% v 24% respectively), bathing or
showering (30% v. 20%), and dealing with incontinence or diapers (18% v
13%).
ƒ
The same is true for older versus younger caregivers when it comes to
bathing or showering (29% 65+ v 17% of 18-34 caregivers) and dealing
with incontinence or diapers (18% 50-64 years v 10% 18-34 years).
ƒ
Older care recipients age 50+ are more likely to need help with each ADL
than younger care recipients’ age 18-49 years.
PAGE 50
Caregiving in the U.S.
While half of caregivers provide assistance with ADLs, less than two in ten (18%)
have received some sort of formal training about how to care for the recipient.
ƒ
However, more than one in three (37%) Level 5 caregivers report having
some training. They are more likely to report getting training than their
counterparts (8% Level 1, 13% Level 2, 23% Level 3, 26% Level 4).
ƒ
African-American caregivers (25%) are more likely to report having
formal training than Asian-American (15%), white (17%) caregivers.
3. Home Modifications and Assistive Devices
Modifying the home and obtaining assistive devices are two things which can
make giving care easier for the caregiver and make life safer for the care
recipient. Nearly equal proportions of caregivers say they have modified the
home or apartment where the care recipient lives or have obtained assistive
devices, such as a bathing bench, for the recipient (Figure 24). Making changes
in the home appears related to having the financial resources, or being driven by
serious need.
Figure 24: Home Modifications and Assistive Devices
% saying yes
Q79, 81. Have you done or obtained any of these types of things to make it easier to care for
your (__): Obtained a bathing bench, magnifying lens for reading, or other helpful devices for
your (_); Had modifications made in the house or apartment where your (___) [lives/lived] to
make things easier?
Obtained assistive
devices
40%
Made home
modifications
39%
0%
20%
40%
60%
80%
100%
Base: 1,247 caregivers in the U.S.
Source: Caregiving in the U.S., National Alliance for Caregiving and AARP, 2004.
PAGE 51
Caregiving in the U.S.
ƒ
Level 3 - 5 caregivers are more likely to have obtained assistive devices
such as a bathing bench or magnifying lens for reading than Level 1
caregivers (52% Level 3, 55% Level 4, 58% Level 5 v 23% Level 1).
ƒ
Level 3 - 5 caregivers are also more likely to have made home
modifications than Level 1 or Level 2 caregivers (47% Level 3, 53% Level 4,
58% Level 5 v 24% Level 1, 32% Level 2)
ƒ
Caregivers helping someone with Alzheimer’s or dementia are also more
likely than others to have made home modifications (51% v 35%) or
obtained assistive devices (46% v 38%) than their counterparts.
ƒ
Upper-income caregivers are more likely than others to say they have had
modifications made to their care recipients’ homes (49% of those making
$100,000+ v 35% of those earning less than $30,000, 38% $30,000-49,000 or
$50,000-99,000).
PAGE 52
Caregiving in the U.S.
F. Caregiver Support
While caregivers shoulder most of the unpaid help for their recipients, many do
receive other unpaid help, typically from the recipient’s children. Paid help is
more common among caregivers in higher income brackets and among those
carrying the heaviest burdens.
1. Unpaid Help
Nearly six in ten caregivers (59%) report that someone else has provided unpaid
care in the past 12 months. The majority of this care comes from the recipient’s
children (Figure 25).
Figure 25: Other Unpaid Help Provided By
Q31. Has anyone else provided unpaid help to your (__) during the last 12 months?
Care recipients'
daughters
42%
26%
Care recipients' sons
13%
Non-relatives
0%
20%
40%
60%
80%
100%
Base: 742 caregivers in the U.S. who report other unpaid help.
Source: Caregiving in the U.S., National Alliance for Caregiving and AARP, 2004.
ƒ
African-American caregivers are significantly more likely to receive help
from the recipient’s niece or nephew (12%), than other subgroups (4% of
white, 4% of Asian, and 2% of Hispanic caregivers).
ƒ
Care recipients under age 50 are more likely to receive additional unpaid
support from mothers (35% v 2%), other friends or neighbors (27% v 9%),
sisters (12% v 4%), and other relatives (11% v 1%).
PAGE 53
Caregiving in the U.S.
ƒ
Care recipients age 50 and older are more likely to receive additional
unpaid support from daughters (47% v 7%) and sons (29% v 2%)
Although many caregivers receive some level of help from others, the majority
say they assume the role as a primary caregiver. Fifty-seven percent of
caregivers act as primary caregivers – that is, either they receive no other unpaid
help or they consider themselves to provide most of the unpaid help.
The following subgroups are more likely than their counterparts to act as
primary caregivers:
ƒ
ƒ
ƒ
ƒ
ƒ
ƒ
ƒ
ƒ
ƒ
ƒ
ƒ
Female (60% v 53% male);
Living with the care recipient (84% v 51% less than one hour away, 39%
one hour or more away);
Level 4 (67%) or Level 5 (80%) caregivers (v 54% Level 1, 51% Level 2, 44%
Level 3);
Older ( 66% 50-64 or 74% of 65+ v 46% 18-34, 52% 35-49);
Caring for someone under 50 (70% v 54% 50+);
Report fair or poor health (69% v 54% excellent health, 55% very good
health);
Not employed while providing care (68% v 54% employed);
Less educated (62% of those with high school or less v 49% with college
degree);
Less income (64% of less than $30,000 v 53% $50,000-99,000, 52%
$100,000+); and
Provide 21+ hours of help (75% v 47% 0-8 hours, 60% 9-20 hours); and
Live in urban areas (64% v 54% suburb, 56% rural).
PAGE 54
Caregiving in the U.S.
2. Paid Help
Caregivers who help care recipients who do not live in a nursing home were
asked about the types of paid care the recipient may have received in the past
year. Among these caregivers four in ten report using paid care through an aide
or nurse, a housekeeper, or other paid helpers.
The most commonly reported help is an aide or nurse through an agency or a
hired housekeeper (Figure 26).
Figure 26: Type of Paid Care
Q34-36. IF NOT IN NURSING HOME: During the past 12 months, did your (_) receive paid
help from any of the following—regardless of who paid for it. First:
23%
Aide or nurse through an agency
20%
Hired housekeeper
12%
Other
7%
Aide or nurse independent of an agency
0%
20%
40%
60%
80%
100%
Base: 1,191 caregivers in the U.S. not living in a nursing home.
Source: Caregiving in the U.S., National Alliance for Caregiving and AARP, 2004.
Among caregivers whose care recipient does not live in a nursing home, we find
that those who are most likely to report the use of any paid help include:
ƒ
ƒ
ƒ
ƒ
ƒ
ƒ
ƒ
ƒ
Upper income (56% of those earning $100,000+ v 37% less than $30,000,
34% $30,000-49,000, 43% $50,000-99,000);
Level 3 (54%), Level 4 (53%), and Level 5 (50%) caregivers v 30% Level 1
or 37% Level 2;
Older caregivers (43% 50-64 and 50% of 65+ v 35% 18-34);
College educated (51% v 34% high school or less and 37% some college);
Those caring for someone with Alzheimer’s or dementia (50% v 38%);
Those living one hour or more away (50%v 36% of those who co-reside);
Secondary caregivers (50% v 35% primary caregivers);
Those not working while caregiving (47% v 39% employed); and
PAGE 55
Caregiving in the U.S.
ƒ
Those whose recipients are 50 or older (46% v 23% of those 18-49).
Looking across subgroups, some differences emerge among the specific types of
paid care used:
ƒ
Of those whose care recipients are not in nursing homes, white caregivers
are more likely to report using a hired housekeeper (22% white v 11%
African-American , 14% Hispanic, 13% Asian-American caregivers).
Older caregivers are more likely to say they use a housekeeper than
younger caregivers (22% 50-64 and 28% 65+ v 14% 18-34) as well as those
with a college education, higher annual household income, secondary
caregivers and those that live in the suburbs.
ƒ
Similarly, caregivers who live outside the household both those less than
an hour away (22%) or more than an hour away (25%) are significantly
more likely to hire a housekeeper than caregivers who live in the same
household as the recipient (12%).
ƒ
Caregivers spending more than twenty hours per week providing care are
more likely than others to hire an aide or nurse from an agency (31% v
19% of those spending eight hours or less) as well as those who care for
someone with Alzheimer’s, those with at least a college degree, secondary
caregivers and those caregivers at Level 3 or higher.
G. Strain and Stress of Caregiving
When we examine a number of ways caregiving may impact caregivers’ lives, we
find that caregiving most often diminishes the amount of time with family,
friends, and doing leisure activities. Many working caregivers say they adjust
their work schedule as a result of their caregiving responsibilities. One-third of
caregivers say they experience emotional stress. Caregivers are less likely to say
caregiving has negatively affected their physical health or finances.
1. Impact on Caregivers’ Physical and Emotional Health
a. Physical Health
Most caregivers say they are in good physical health. In fact, more than eight in
ten caregivers describe their health as excellent (25%), very good (30%), or good
(28%). About one in six (17%) considers their health as fair or poor (12% and 5%,
respectively). In general, about six in ten (61%) members of the adult population
PAGE 56
Caregiving in the U.S.
in the U.S. say their health is very good or excellent, three in ten (29%) say their
health is good, and one in ten (9%) say their health is fair or poor.20
While most caregivers report good health, several factors are associated with the
degree of one’s health: gender, age, education, income, and living with the
recipient. Additionally, the greater the caregiving responsibilities, the greater the
chance the caregiver’s health is in fair or poor condition.
Caregivers who report their health is fair or poor are more likely than their
counterparts to be (Figure 27):
ƒ
ƒ
ƒ
ƒ
ƒ
ƒ
ƒ
Level 5 caregivers (35% v 12% of Level 1 report fair or poor health);
Lower income (28% of those making less than $30K v 2% of caregivers
earning $100K+);
Living with the care recipient (26% v 12% of those more than an hour
away);
Caregivers 50-64 (24%) or 65+ (24%) v 9% of 18-34 caregivers);
Lower educated (24% of those with a high school diploma or less v 10% of
college educated);
Primary (20%) more than secondary (12%) caregivers; and
Female (19%) more than male caregivers (13%).
Figure 27: Fair or Poor Health Status
% of caregivers saying own health is fair or poor
87. How would you describe your own health? Is it excellent, very good, good, fair, or poor?
17%
All caregivers
35%
Level 5 caregivers
28%
Lower income (<$30K)
26%
Living with care recipient
Caregivers 50 or older
24%
Lower educated (HS or less)
24%
0%
20%
40%
60%
80%
100%
Base: 1,247 caregivers in the U.S.
Source: Caregiving in the U.S., National Alliance for Caregiving and AARP, 2004.
20
Personal correspondence dated March 25, 2004 from John Crews, DPA, Health Scientist, Centers for
Disease Control and Prevention. Data to be published later this year.
PAGE 57
Caregiving in the U.S.
We asked caregivers how they would say taking care of the person they assist
has affected their health. Almost three in four caregivers (74%) say being a
caregiver has had no effect on their health. Fifteen percent say caregiving has
made their health worse. Fewer (9%) say being a caregiver has made their
health better.
Caregivers who say caregiving has made their health worse closely mirror those
who report being currently in fair or poor health:
ƒ
ƒ
ƒ
ƒ
ƒ
ƒ
ƒ
Level 4 (20%) and Level 5 (34%) caregivers (v 8% Level 1, 12% Level 2,
12% Level 3);
Co-residents (22% v 11% of those more than an hour away);
Older (19% 50-64 and 21% 65+ v 9% 18-34);
Caring for someone with Alzheimer’s or dementia (20% v 13% of others);
Lower income (19% of those earning less than $30,000 v 7% of $100,000+);
Female (18% v 10% of male caregivers); and
Primary (18%) more than secondary (11%) caregivers.
Our analysis indicates that age is the best demographic predictor of caregivers
saying being a caregiver has made their health worse. That is, the older a
caregiver is, the more likely the caregiver is to say that caregiving has made their
health worse. A caregiver’s gender is also an important demographic variable
that helps predict the impact of being a caregiver on the caregivers’ health.
Other variables that also help predict the impact of caregiving on the caregiver’s
health is whether or not the caregiver feels that they had a choice in taking on
this role and Level of Burden . The higher the reported Level of Burden, the
greater the perceived impact on caregiver’s health.21
Few caregivers say caregiving is a physical strain. This may be a reflection of
the fact that many caregivers consider themselves healthy or the fact that most
common ADLs and IADLs do not require a great deal of physical strength. On a
scale of 1 to 5, where 5 is “very much a physical strain,” a relatively small
proportion of caregivers (15%) rate their caregiving situations as a 4 or 5.
However, we find again the most burdened caregivers tend to experience more
strain than others (rating a 4 or 5 on physical strain):
ƒ
ƒ
21
Level 5 caregivers (46% rate their physical strain a four or five on a five
point scale v 3% Level 1, 14% Level 2, 16% Level 3, 19% Level 4);
Caregivers in fair or poor health (34% v 8% of those in excellent health);
See methods for a description of variables entered into the regression model.
PAGE 58
Caregiving in the U.S.
ƒ
ƒ
ƒ
Those living with the recipient (25% v 11% who live less than an hour
away or 14% one hour or more away);
Older caregivers (17% 50-64 and 22% 65+ v 10% 18-34); and
Primary caregivers (19% v 10% of secondary caregivers).
Additionally, one-quarter of caregivers (26%) admit that they get less exercise
than before they took on caregiving responsibilities.
b. Emotional Health
Caregiving appears to create more emotional stress than physical strain. One
third (35%)of caregivers say taking care of the person they help rates a four or
five, on a five point scale where five is very stressful. Approximately one in four
say taking care of the person they help is not at all stressful (Figure 28).
Figure 28: Emotional Stress of Caregiving
57. Using the same scale from 1 to 5, where 1 is not at all stressful and 5 is very stressful, how
emotionally stressful would you say that caring for your (__) [is/was] for you?
27%
1 Not stressful
17%
2
20%
3
16%
4
18%
5 Very stressful
0%
20%
40%
60%
80%
100%
Base: 1,247 caregivers in the U.S.
Source: Caregiving in the U.S., National Alliance for Caregiving and AARP, 2004.
Caregivers who experience the greatest emotional stress (rate the situation as a
four or five) tend to be:
ƒ
ƒ
ƒ
Females (40% v 26% of male caregivers);
Between the ages of 35-49 years (38%), 50-64 years (38%) v 18-34 (28%)
Co-residing (43%) or living at a distance of one hour or more (47%) v
less than one hour away (28%)
PAGE 59
Caregiving in the U.S.
Caring for someone with Alzheimer’s or dementia (42% v 32%); and
White (36%), Hispanic (36%), or African American (30%) compared to
Asian-American caregivers (23%); and
ƒ In only fair or poor health themselves (47% v 27% excellent, 34% very
good);
Feeling one had a choice in taking on the role of a caregiver is linked with the
degree of emotional stress felt. Nearly four in ten caregivers say they feel they
had no choice in taking on caregiving responsibilities (Figure 29).
ƒ
ƒ
Figure 29: Choice of Becoming a Caregiver
59. We have been talking about the help you [provide/provided] for your (__). Do you feel you
had a choice in taking on this responsibility for caring for your (__)?
59%
Had a choice
39%
Had no choice
0%
20%
40%
60%
80%
100%
Base: 1,247 caregivers in the U.S.
Source: Caregiving in the U.S., National Alliance for Caregiving and AARP, 2004.
Women are more likely to say they felt they did not have a choice in taking on
this responsibility than men (42% v 34%). Caregivers between the ages of 50-64
years are less likely to feel they had a choice compared to those 18-34 years (42%
v 34%). Co-residing caregivers are less likely to feel they did not have a choice
than caregivers who live less than an hour away (45% v 36%).
ƒ
Half of caregivers (51%) who feel they had no choice in taking on
caregiving responsibilities also feel the situation is emotionally stressful
(rate a four or five on a five point scale).
ƒ
However, only one-quarter (24%) of those who feel they did have a choice
experience emotional stress at this level.
PAGE 60
Caregiving in the U.S.
Caregivers who say they feel they did not have a choice in taking on the
caregiver role also say they are less healthy and more heavily burdened than
caregivers who say they feel they had a choice in taking on this responsibility.
Caregivers who say they feel they did not have a choice in taking on the
caregiving role are typically:
ƒ
ƒ
ƒ
ƒ
ƒ
Female (42% v 34% male);
Primary caregivers (45% v 32% secondary caregivers);
Caregivers at higher Levels of Burden (47% Level 4, 51% Level 5 v 32% of
Level 1 caregivers);
Those living with the care recipient (45% v 36% of those living less than an
hour away); and
Those in fair or poor health (51% v 38% good health, 34% excellent health).
Our analysis indicates that Level of Burden and whether or not one feels a
choice in taking on caregiving responsiblities are the two greatest influences in
caregiver’s perceived emotional stress. Other significant factors include the
condition of one’s health, followed by living in the same household as the
recipient.22
22
See methods for a description of variables entered into the regression model.
PAGE 61
Caregiving in the U.S.
2. Impact of Caregiving on Family and Leisure Activities
Half of caregivers say they have less time for families and friends than before
taking on caregiving responsibilities. A substantial proportion say also say they
have given up vacations, hobbies, or other social activities as a result of
caregiving (Figure 30).
Figure 30: Impact of Caregiving on Family and Leisure Activities
% saying yes
Q53-55. There may have been other ways in which providing care to your (__) has affected your
life. As a caregiver …
51%
Less time for friends or family
44%
Give up vacations, hobbies, social activities
26%
Get less exercise than before
0%
20%
40%
60%
80%
100%
Base: 1,247 caregivers in the U.S.
Source: Caregiving in the U.S., National Alliance for Caregiving and AARP, 2004.
Caregivers who experience the greatest impact on family include:
ƒ
ƒ
ƒ
ƒ
ƒ
ƒ
Female caregivers (54% v 47% of male caregivers);
Primary caregivers (55% v 49% secondary caregivers);
Caregivers at a higher Level of Burden (69% Level 4 84% Level 5 v 29%
Level 1, 47% Level 2, 57% Level 3);
Those living with the recipient (67% v 44% of those living less than an
hour away and 56% living one hour or more away);
Caregivers who consider their health as fair or poor (60% v 44% of those
in excellent health);
Caregivers in child-rearing years: 35-49 and 50-64 years old (58% and 55%
respectively, v 42% of 18-34 and 46% of 65+);
PAGE 62
Caregiving in the U.S.
Giving up vacations, hobbies, and other activities affects:
ƒ
ƒ
ƒ
ƒ
ƒ
Caregivers at a higher Level of Burden (52% Level 3, 64% Level 4, 76%
Level 5 v 23% Level 1, 37% Level 2);
Those reporting fair or poor health (52%) more than those in excellent
health (37%);
Primary caregivers (49%) more than secondary (40%);
White (45%), Hispanic (48%) caregivers more so than African-American
caregivers (35%); and
Those that co-reside or live more than an hour away compared to those
that live within an hour (59%, 52% v 36%).
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Caregiving in the U.S.
3. Impact of Caregiving on Work
Most caregivers currently work (48% full-time and 11% part-time) while
providing care, or have worked at some time while being a caregiver (59%).
More than six in ten of these working caregivers (62%) report their caregiving
responsibilities have affected their work.
More than half of working caregivers say holding these two roles simultaneously
has resulted in having to go in (to work) late, leave early, or take time off during
the day to provide care. Fewer caregivers report having to take a leave of
absence, go from full-time to part-time work or taken a less demanding job, quit
working, lose job benefits, turn down a promotion or choose early retirement
(Figure 31).
Figure 31: Impact of Caregiving on Work
% saying yes
Q41-47. IF WORKING WHILE A CAREGIVER: In your experience as both a worker and a
caregiver, did you ever
Have to go in late, leave early, or take time off
57%
Have to take a leave of absence
17%
Have to go from working full-time to part-time
10%
Have to give up work entirely
6%
Lose any of your job benefits
5%
Have to turn down promotion
4%
Choose early retirement
3%
0%
20%
40%
60%
80%
100%
Base: 935 caregivers in the U.S. who are currently or have worked while caregiving
Source: Caregiving in the U.S., National Alliance for Caregiving and AARP, 2004.
PAGE 64
Caregiving in the U.S.
The following subgroups are most likely to report making one or more of these
work-related adjustments:
ƒ
ƒ
ƒ
ƒ
ƒ
ƒ
ƒ
Female more than male ( 65% v 57%) caregivers;
Primary more than secondary (67% v 58%) caregivers;
Caregivers at a higher Level of Burden ( 92% Level 5, 79% Level 4, 69%
Level 3 v 43% Level 1);
Ages 35-49 (65%) and 50-64 (66%) compared to those ages 18-34 (54%);
African-American caregivers (72%) compared to white (60%), AsianAmerican (54%);
Those living with the recipient (71%) or those living more than an hour
away (68%) compared to 57% of those who live less than one hour away;
and
Those helping someone with Alzheimer’s or dementia (70% v 59%).
Table 9: Work-Related Adjustments by Level of Burden
(Base = Caregivers employed while caregiver)
Q41-Q47. IF WORKING WHILE A CAREGIVER: In your experience as both a worker and a
caregiver, did you ever:
Total
Level
1
Level
2
Level
3
Level
4
Level
5
In late, leave early etc.
57%
40%
51%
63%
75%
83%
Took leave of absence
17%
8%
17%
14%
22%
41%
Went from full time to part
time
10%
3%
7%
9%
15%
37%
Gave up work entirely
6%
1%
3%
4%
4%
35%
Lost any job benefits
5%
2%
2%
5%
9%
15%
Turned down promotion
4%
2%
3%
5%
6%
14%
Chose early retirement
3%
1%
1%
2%
3%
12%
None of the above
38%
57%
44%
31%
21%
8%
Base: 935 caregivers in the U.S.
Source: Caregiving in the U.S., National Alliance for Caregiving and AARP, 2004.
PAGE 65
Caregiving in the U.S.
4. Financial Hardship on Caregivers
Not counting those who care for a spouse, about half of caregivers (54%) report
contributing financially to the care of their recipient. These caregivers spend an
average of $200 in a typical month on the recipient’s care.
The following caregivers spend significantly more per month than others:
ƒ
ƒ
ƒ
Level 5 caregivers ($324);
Primary caregivers ($232); and
Caregivers 65 or older ($217).
The majority of caregivers say they feel little or no financial hardship as a result
of providing care (Figure 32).
Our analysis shows that the two greatest predictors of caregivers’ financial
hardship are Level of Burden and whether they feel they had a choice in taking
on caregiving responsibilities. Caregivers at higher Levels of Burden and those
who do not feel they had a choice to take on this role report greater financial
hardship. Other factors contributing to financial hardship are the caregiver’s
age, health, and living with the care recipient. The older the caregiver, the
poorer the caregivers’ perceived health, and living with the care recipient
increase the reported level of financial hardship.
Figure 32: Financial Hardship on Caregivers
Q58. Using the same scale from 1 to 5, where 1 is no hardship at all and 5 is a great deal of
hardship, how much of a financial hardship would you say that caring for your (__) [is/was] for
you?
62%
1 No hardship
14%
2
11%
3
5%
4
7%
5 Great deal
0%
20%
40%
60%
80%
100%
Base: 1,247 caregivers in the U.S.
Source: Caregiving in the U.S., National Alliance for Caregiving and AARP, 2004.
PAGE 66
Caregiving in the U.S.
However, twelve percent say they experience considerable financial hardship, in
the 4 or 5 ranges. This hardship is most severe among those who do the most,
especially for young care recipients, and have the least resources to begin with.
ƒ
One-third of Level 5 caregivers (34%) say they feel a financial hardship as
a result of providing care (v 6% of Level 1 caregivers rating a 4 or 5).
ƒ
Caregivers who live with the recipient (24%) are more likely to say they
experience financial hardship as a result of being a caregiver than
caregivers who do not live with the person they care for (8% of those who
live less than an hour away and 9% of those who live more than an hour
away).
ƒ
One-quarter of caregivers who help someone under age 50 (25%) report
financial hardship compared to 9% of those helping someone age 50+.
ƒ
Not surprisingly, lower income caregivers (19% of those earning less than
$30,000) experience more financial hardship than those in other income
categories (12% $30,000-49,000, 11% $50,000-99,000, 5% $100,000 or more).
Caregivers who report they have graduated from college are less likely to
say they experience financial hardship as a result of caregiving than those
with less education (9% v 14% with high school or less and 15% of those
with some college).
ƒ
African-American caregivers (22% say 4 or 5) more likely than white
(10%), Hispanic (14%), or Asian-American (11%) caregivers to experience
financial hardship as a result of being a caregiver.
PAGE 67
Caregiving in the U.S.
H. Coping with Stress
Caregivers say they use a range of coping mechanisms to deal with the demands
of caregiving. Praying is the most commonly reported method of coping
followed by talking with friends or relatives. Reading about caregiving in books
or materials, exercising, and going on the Internet provide other outlets for
dealing with stress. Seeking help from a professional or spiritual counselor, and
taking medication are less commonly used techniques (Figure 33).
Figure 33: Coping with Demands of Caregiving
% saying yes
Q60-67. I’m going to read a list of ways that caregivers such as yourself have coped with the
demands of caregiving. For each one, please tell me whether you have used any of these.
[Have/Did] you ever [tried/try] to cope with caregiving stress by:
73%
Praying
Talking with or seeking advice from friends or
relatives
61%
44%
Reading about caregiving
41%
Exercising or working out
33%
Going on the Internet to find information
27%
Talking to a professional or spiritual counselor
Taking medication
0%
12%
20%
40%
60%
80%
100%
Base: 1,247 caregivers in the U.S.
Source: Caregiving in the U.S., National Alliance for Caregiving and AARP, 2004.
ƒ
While many caregivers across all subgroups use prayer to help with
caregiving stress, African-American (84%) and Hispanic (79%) caregivers
are significantly more likely to cope by praying than white (71%) or Asian
(50%) caregivers.
PAGE 68
Caregiving in the U.S.
ƒ
Women are also more likely to say they pray as a way to cope with
caregiving stress more than men (80% v 61%) as are caregivers at higher
Levels of Burden (78% Level 4, 85% Level 5 v 66% Level 1 and 67% Level
2).
ƒ
Caregivers in fair or poor health tend to use prayer more than others (82%
v 70% of those in excellent health), and Level 5 caregivers are more likely
to say they pray than Level 1 caregivers (85% v 66%).
ƒ
Female caregivers also tend to relieve stress through talking to friends and
relatives more so than male caregivers (67% v 51%).
ƒ
While one third (33%) of caregivers overall use the Internet as a tool for
dealing with caregiving demands, those most likely to use this mechanism
include Asian-American caregivers (43%), those under 65 (for example,
41% of 35-49 caregivers), college educated (41%), upper income (44% of
those making $100,000+), caregivers helping someone with Alzheimer’s or
dementia (42%), and secondary caregivers (40%).
Among those who use the Internet as a coping mechanism, nearly nine in ten
(88%) search for information about the care recipient’s condition or treatment,
more than half (55%) seek information about services available for care
recipients, and four in ten (39%) look for support or advice from other caregivers.
PAGE 69
Caregiving in the U.S.
I. Use of Supportive Services in the Community
Nearly half of caregivers (48%) say they have used some type of supportive
service to help care for their relatives and friends. Requesting information about
financial help for the care recipient is more common than any other service we
asked about (Figure 34).
Figure 34: Use of Outside Services
Q71-78. In your experience as a caregiver, [have/did] you ever…
Requested info about
financial help
25%
Obtained formal
training
18%
Used transportation
service
18%
Used service such as
Meals on Wheels
11%
Enrolled recipient in
recreation camp
8%
Took part in support
groups
7%
Enrolled recipient in
Adult Day Care
5%
Used respite service
5%
0%
20%
40%
60%
80%
100%
Base: 1,247 caregivers in the U.S.
Source: Caregiving in the U.S., National Alliance for Caregiving and AARP, 2004.
PAGE 70
Caregiving in the U.S.
ƒ
Caregivers who help someone with Alzheimer’s or dementia (58%) are
more likely than other caregivers to seek the seven types of services we
asked about than those without Alzheimer’s (58% v 45%).
ƒ
Caregivers who co-reside with the person they care for are also more
likely to seek these services than those who live within an one hour of the
person they care for (55% v 46%).
ƒ
Caregivers age 50-64 years and those age 65+ are more likely to seek these
services than caregivers ages 18-34 (55%, 56% v 40%).
ƒ
Hispanic caregivers (3%) are least likely to have participated in support
groups, compared to Asian-American (12%), African-American (11%), or
white (7%) caregivers.
ƒ
Caregivers who care for people living in urban areas are more likely to
report using the services we asked about (58%) than caregivers who care
for people living in suburban (42%) or rural (44%) areas. Specifically,
urban caregivers tend to request financial information, use transportation
services, and use adult day care more so than others.
ƒ
Level 5 caregivers are more likely to say they experience financial
hardship than caregivers at other Levels of Burden, and they are more
likely to say they have requested information about how to get financial
help for the person they care for than caregivers at Levels 1, 2, and 3 (35%
v 20%, 23%, 21%).
ƒ
Caregivers who help those between ages 18-49 are more likely to say they
experience financial hardship than caregivers who help someone age 50+,
and they are also more likely to say they have requested information
about getting financial help for the person they care for (35% v 22%).
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Caregiving in the U.S.
J. Unmet Needs for Help, Information, or Support in
Caregiver Role
1. Identifying Unmet Needs
We asked caregivers if they need more help or information about fourteen
activities or issues that caregivers commonly face. Two-thirds (67%) say they
need more help with or information about at least one of these items.
More than one in three caregivers (35%) say they need help to find more time for
themselves. Three in ten say they need help or information about balancing
work and family responsibilities as a caregiver, and managing emotional and
physical stress (Figure 35).
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Caregiving in the U.S.
Figure 35: Unmet Needs
% saying yes
Q82a-n. As a caregiver, on which of the following do you [need/needed] more help or
information:
35%
Finding time for myself
Keeping the person I care for safe at home
30%
Balancing my work and family responsibilities
29%
Managing my emotional and physical stress
29%
Easy activities I can do with the person I care
for
27%
22%
How to talk with doctors
20%
Making end-of-life decisions
16%
Moving or lifting the person I care for
Managing challenging behaviors, such as
wandering
14%
Choosing an assisted living facility
13%
Choosing a home care agency
13%
11%
Managing incontinence or toileting problems
8%
Choosing a nursing home
5%
Finding non-English educational materials
0%
20%
40%
60%
80%
100%
Base: 1,247 caregivers in the U.S.
Source: Caregiving in the U.S., National Alliance for Caregiving and AARP, 2004.
PAGE 73
Caregiving in the U.S.
Minority caregivers are much more likely to say they need more help with
information than white caregivers (Figure 36).
Figure 36: Reporting One or More Unmet Needs
Q. Are you of Hispanic origin or background? Q. Would you say you are white, black or
African American, Asian or Pacific Islander, or something else?
80%
Hispanic
75%
African American
73%
Asian
64%
White
0%
20%
40%
60%
80%
100%
Base: 1,247 caregivers in the U.S.
Source: Caregiving in the U.S., National Alliance for Caregiving and AARP, 2004.
ƒ
Caregivers helping someone with Alzheimer’s or dementia say they need
help or more information than caregivers who do not care for an
Alzheimer’s patient or someone with dementia (74% v 65%).
ƒ
Level 5 caregivers are also more to say they need help or more
information than Level 1 or 2 caregivers (82% v 55%, 65%).
ƒ
Nearly eight in ten of those caregivers (79%) who already receive an
outside support service say they need more help or information about at
least one item.
ƒ
Caregivers who live in urban areas (28%) are more likely to say they need
help or information on how to talk to doctors and other health
professionals than suburban (20%) or rural (17%) caregivers.
ƒ
Female caregivers, caregivers under age 65, and caregivers who live with
the person they care for are more likely to say they need help or
information related to personal needs such as reducing stress, finding
PAGE 74
Caregiving in the U.S.
more time for oneself, and balancing work and family than their
counterparts.
ƒ
Caregivers who report providing care for 21 or more hours per week are
more likely to say they need help or information on six items than those
who provide less than 20 hours of care per week. These items include:
finding time for myself, keeping the person I care for safe at home,
managing emotional and physical stress, learning how to talk with
doctors and other health care professionals, moving or lifting the person I
care for.
2. Where Caregivers Would Go For Information
We asked caregivers where they look for information about some aspects of
caregiving. Caregivers say they turn to the Internet, a doctor, family or friends,
and other heath professionals (Figure 37).
Figure 37: Where Caregivers Would Go For Information (Top Mentions)
Q83. If you were looking for information about some aspect of helping take care of your (__),
where would you turn? MULTIPLE RESPONSE
29%
Internet
28%
Doctor
Family or friends
Other health
professionals
0%
15%
10%
20%
40%
60%
80%
100%
Base: 1,247 caregivers in the U.S.
Source: Caregiving in the U.S., National Alliance for Caregiving and AARP, 2004.
PAGE 75
Caregiving in the U.S.
ƒ
Caregivers under age 65 (36% of those ages 18-34), college graduates
(37%), upper income (44% of those with annual household income of
$100,000+), those living an hour or more away from the person they care
for (41%), secondary caregivers (37%), employed caregivers (32%), and
those living in an urban (34%) and suburban (32%) areas are more likely
to turn to the Internet for information than their counterparts.
ƒ
Level 5 caregivers are more likely to turn to a doctor for information than
Level 1, 2, or 3 caregivers (42% v 24%, 22%, 24%). Caregivers who live
with the person they care for are more likely to turn to a doctor for
information than those who co-reside with the person they care for (36% v
26% of caregiver who live less than an hour away from the person they
care for and 22% of caregivers who live an hour or more away from the
person they care for).
ƒ
Caregivers who care for someone over age 50 are more likely to turn to a
doctor for information than caregivers who care for someone under age 50
(31% v 18%).
ƒ
Younger caregivers are less likely to turn to a doctor for information than
older caregivers (19% age 18-34 v 27% of caregivers age 35-49, 35% of
caregivers age 50-64, and 31% of caregivers age 65+).
ƒ
Younger caregivers are more likely to turn to friends or family for
information than older caregivers (25% of caregivers age 18-34 v 13% of
caregivers age 35-49, 9% of caregivers age 50-64, and 12% of caregivers
65+).
ƒ
Caregivers at Level 1 are more likely to turn to friends or family than
Level 4 or Level 5 caregivers (19% v 11%, 10%)
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Caregiving in the U.S.
K. Spotlight on Caregivers in Racial/Ethnic Subgroups
We over-sampled members of three ethnic groups to enable us to examine the
potential impact of ethnicity on caregiving. Overall, we find caregivers provide
similar types of care and experience similar stresses regardless of ethnic
background.
ƒ
African-American caregivers. African-American caregivers are more likely
to have children under age 18 living in the household than caregivers from
other racial or ethnic groups (53% v 35% white, 39% Hispanic, 34% Asian).
African-American caregivers are also more likely to be single, never married
(32% v 14% white, 23% Hispanic caregivers) and less likely to be married
(13% v 28% white, 30% Hispanic, 33% Asian caregivers).
African-American caregivers are more likely to be ages 18-34 (17% v 10% 5064 years, 5% 65+).
Among caregivers who do not live with the person they care for, AfricanAmericans are more likely to say they visit the person they care for more than
once a week (65% v 55% white, 44% Asian caregivers).
African-American caregivers are more likely to live in urban areas (49% v
24% white, 35% Asian caregivers). Similarly, African-American care
recipients are more likely to live in urban areas (49% v 28% white care
recipients).
African-American caregivers are more likely to say they have been employed
since becoming a caregiver (68% v 56% white caregivers). They are also
more likely to say they spend $101-$500 in a typical month for groceries,
medicines, or other kinds of cash support for the non-spousal person they
care for (36% v 22% white caregivers). Therefore, it is not surprising that
African-American caregivers are more likely to say caregiving is a financial
hardship (22% say four or five on a five point scale v 10% white, 14%
Hispanic, 11% Asian caregivers). African-American caregivers are also more
likely to ask for information on how to get financial help for the person they
take care of (30% v 19% Asian caregivers).
African-American caregivers are more likely to say they perform three or
more IADLs for the person they care for (88% v 78% white, 79% Asian).
They are also more likely to say they obtained formal training of some sort
PAGE 77
Caregiving in the U.S.
about how to care for a person with the kinds of needs their care recipient has
(25% v 17% white and 15% Asian caregivers).
African-American caregivers are more likely to say they give medicine, pills
or injections to the person they care for (48% v 39% white, 32% Asian
caregivers). These caregivers are more likely to say they need to know more
about the prescription mediation the person they care for takes (28% v 20%
white caregivers).
African-American caregivers are more likely to say they obtained an outside
service to provide transportation for the person they care for (28% v 16%
white, 18% Hispanic caregivers).
African-American caregivers are more likely to say they cope with the
caregiving stress by praying (84% v 71% white, 50% Asian Caregivers).
African-American caregivers are also more likely to say they cope with
caregiving stress by talking to a professional or spiritual counselor (35% v
26% white, 25% Hispanic, 21% Asian caregivers).
ƒ
Hispanic caregivers. Like African-American caregivers, Hispanic caregivers
are likely to spend more than eight hours a week providing care.
Hispanic caregivers are more likely to say they live with the person they care
for (34% v 22% white caregivers) and they are also more likely to say help the
person they care for with at least one ADL (59% v 48% white caregivers).
Hispanic caregivers are likely to say they are Level 4 or 5 caregivers (41%).
They are also more likely to say they have given up vacations, hobbies, or
their own social activities than African-American caregivers (48% v 35%).
ƒ
Asian-American caregivers. Asian-American caregivers stand out as being
well educated (61% have at least four years of college v 36% white, 30%
African-American, 27% Hispanic caregivers).
Asian caregivers also report higher household incomes than others (53%
report a household income of $50,000+ v 42% white, 33% African-American
caregivers, 38% Hispanic caregivers). It is therefore not surprising that Asian
caregivers are more likely to say caregiving is not a financial hardship (one or
two on a five point scale, 77% v 66% African-American).
PAGE 78
Caregiving in the U.S.
Asian caregivers, like white caregivers, are more likely to say the person they
care for lives in the suburbs (43% v 27% African-American, 28% Hispanic
caregivers). Similarly, Asian caregivers are more likely to say they live in the
suburbs (56% v 40% white, 34%African-American, 37% Hispanic caregivers).
Interestingly, Asian caregivers are less likely to say the person they care for
has Alzheimer’s or other mental confusion (86% v 75% white, 72% AfricanAmerican, 75% Hispanic caregivers).
Asians are less likely to report emotional stress (only 23% rate a 4 or 5, on a 5
point scale where five is very stressful (v 36% white, 36% Hispanic
caregivers).
Asian caregivers are more likely to say they have tried to cope with
caregiving stress by going on the Internet to seek information (43% v 33%
white, 29%African-American caregivers). Sixteen percent of Asian-American
caregivers report needing help finding non-English educational materials
about caregiving. This figure is undoubtedly a low since we only
interviewed English speaking Asians. If we had interviewed Asian
caregivers in their native language, we probably would have found a greater
need for non-English educational materials.
ƒ
White caregivers. White caregivers are more likely to say they are 50 years of
age or older than those in other racial/ethnic subgroups (46% of white
caregivers, 29% African-American, 34% Hispanic, 35% of Asian-American
caregivers).
Like Asian-American caregivers, white caregivers tend to report higher
incomes (42% make $50,000 or more). However, unlike Asian caregivers,
white caregivers are more likely to say they are currently providing care
(68% v 56%).
While a large proportion of white caregivers say they live in a suburb (40%),
white caregivers are more likely to say they live in a rural area (34% v 15%
African-American, 19% Hispanic, 9% Asian caregivers). Similar to Asian
caregivers, white caregivers also more likely say the person they care for lives
in the suburbs (40% v 27% African-American, 28% Hispanic caregivers).
Like Hispanic caregivers, white caregivers are likely to say they have given
up vacations, hobbies, or their own social activities (45% v 35% AfricanAmerican caregivers). Yet white caregivers are less likely to say caregiving
is a physical strain (69% v 61% African-American caregivers), and they are
PAGE 79
Caregiving in the U.S.
more likely to say caregiving is not a financial hardship (one or two on a five
point scale 79% v 66% African-American).
White caregivers are also less likely to say they feel a need for more help or
information keeping the person they care for safe at home, balancing their
work and family responsibilities, finding easy activities they can do with the
person they care for, moving or lifting the person they care for than AfricanAmerican, Hispanic, or Asian caregivers.
L. Comparing Caregivers by Age of Recipient
Several key distinctions emerge looking at caregivers of those 50 or older, and
caregivers of 18-49 year olds.
ƒ
Caregivers who help someone 50 or older tend to be older than caregivers
who help someone between the ages of 18-49 years (mean age 47 years v
41 years). The average (mean) age of a younger care recipient (18-49) is 33
years and the average (mean) age of a care recipient age 50 or older, is 75
years.
ƒ
Two in three (66%) of caregivers who help someone between the ages of
18-49 years are employed full or part-time, compared to 57% of caregivers
who help someone age 50+.
ƒ
The caregivers who help someone 50 or older tend to be better educated
and earn higher incomes than those helping recipients 18-49. For
example, 37% of those caring for people 50 and up have a college degree,
compared to 26% of those helping 18-49 recipients; and 44% helping the
older set make $50,000 or more, whereas only 35% of caregivers helping
those 18-49 do so.
ƒ
Caregivers helping someone 18-49 are also more likely to be providing
unpaid care for more than one person: these caregivers help an average of
2.6 recipients, compared to 1.4 for those helping someone 50 or older.
ƒ
While caregivers who care for someone 50 or older tend to be helping
their mothers (34%), grandmothers (11%), or fathers (10%), those helping
someone 18-49 are much more likely to be caring for an adult child (27%),
a sibling (15%) or a non-relative (25%).
ƒ
Caregivers of younger care recipients (ages 18-49) most commonly report
mental illness or depression as the biggest problem or illness for the
PAGE 80
Caregiving in the U.S.
person they care for (23%). On the other hand, caregivers of older care
recipients (age 50+) most commonly report the main problem or illness as
aging (15%), cancer (9%), diabetes (9%), and Alzheimer’s (8%), and heart
disease (9%).
ƒ
Caregivers of younger care recipients (ages 18-49) are more likely to report
being primary caregivers (70%) than caregivers of older care recipients
ages 50+ (54%), and tend to be living with the recipient (33%) more often
than caregivers helping 50+ recipients (22%). In fact only 38% of those
helping 18-49 recipients report the presence of some other type of unpaid
help, whereas 65% of those helping 50+ recipients have done so.
ƒ
One in three (33%) caregivers of younger care recipients (ages 18-49)
report assisting the person they care for with at least one ADL, whereas
more than half (55%) of caregivers helping older recipients do so (age
50+). Instead, caregivers of people 18-49 are more likely performing
IADLs, especially helping managing finances (79%) and transportation
(77%).
ƒ
While nearly half (46%) of caregivers helping someone 50 or older not in a
nursing home receive some type of paid help, only 23% of those caring for
18-49 recipients have done so.
ƒ
Caregivers who help younger care recipients provide an average of $205
per month financial support. Caregivers who help older care recipients
provide an average of $197 per month. Caregivers of younger care
recipients are more likely to report financial hardship (25% rate four or
five on a five point scale) than caregivers of older care recipients (9%), and
to report having requested information about how to get financial help for
the recipient (35% v 22%).
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Caregiving in the U.S.
Table 10: Comparing Caregivers Characteristics by Age of Recipient
Average recipient age
Relationship
Problems/Illnesses
Average caregiver age
Demographics
Support
Recipients 18 - 49
Recipients 50 or older
33
75
Adult child, sibling, or
non-relative
Mother, grandmother, or
father
Mental illness,
depression, or
emotional problems
financial problems
Aging, Alzheimer’s, cancer,
diabetes, heart disease,
mobility, blindness
41
47
Working
Retired, married
Primary caregivers
Feel financial hardship
Get more paid
Provide three or more
activities of daily living
Base: 1,247 caregivers in the U.S.
Source: Caregiving in the U.S., National Alliance for Caregiving and AARP, 2004.
PAGE 82
Caregiving in the U.S.
Table 11: Demographic Profile of Caregivers by Age of Recipient
Total
Total
Gender
Male
Female
Race of caregiver
White
African American
Hispanic
Asian American
Age of caregiver
Under 35 years old
35-49
50-64
65 or older
Mean (years)
Marital status
Married/living with partner
Single, never married
Separated/divorced
Widowed
Educational attainment
High school or less
Some college
Technical school
College grad
Grad school +
Current employment
Employed full-time
Employed part-time
Not employed
Household income
< $30K
$30K-$50K
$50K-$75K
$75K-$100K
$100K+
Caregivers of
18-49 recipients
Caregivers of
recipients 50+
100%
20%
79
39%
61
44%
56
37%
63
73%
12
10
4
69%
16
11
4
74%
11
10
4
26%
32
30
13
46 yrs
42%
30
19
9
41 yrs
22%
33
32
13
47 yrs
62%
18
14
6
53%
22
17
7
63%
17
14
6
34%
27
3
22
13
41%
3
2
18
8
33%
26
3
23
14
48%
11
41
54%
12
33
47%
10
43
25%
26
18
9
15
32%
27
19
9
7
22%
25
18
9
17
Base: 1,247 caregivers in the U.S.
Source: Caregiving in the U.S., National Alliance for Caregiving and AARP, 2004.
PAGE 83
Caregiving in the U.S.
Appendix A: Detailed Methodology
Appendix A: Detailed Methodology
The national study contains the results of 6,139 interviews among adults in the
U.S., of whom 1,247 were caregivers. A total of approximate 200 caregiver
interviews each of African American, Hispanic, and Asian caregivers were
obtained.
A companion study was conducted for AARP in seven states, resulting in
approximately 400 caregiver interviews in each: California (from a total of
n=2,040 interviews), Delaware (n=1,827), Illinois (n=2,072), Kansas (n=1,833),
Ohio (n=1,864), Virginia (n=1,885), and Washington (n=1,979).
The sections below describe the basic research and sample designs for the study,
the research procedures used to implement the project, the methodology used for
estimating caregivers, weighting specifics, and descriptions of cross-tabulated
variables. The response rate is included at the end of this section.
A. Research Design
The research design of this study is based on achieving several goals for NAC
and AARP. One driving goal of the project is to estimate the number of
caregivers in the U.S. population, as well as the number of caregiving
households. Other aims include comparing caregiving roles and impacts across
racial and ethnic groups and expanding on the understanding gained from the
1997 NAC/AARP caregiving survey.
In conjunction with NAC and AARP, Belden Russonello & Stewart (BRS) and
Research/Strategy/Management, Inc. (RSM) designed a survey research project
to achieve these goals. The project design included developing a methodology
for calculating incidences, drafting and pre-testing a questionnaire, and devising
a series of sample frames to achieve a nationally representative sample of
caregivers, as well as over-samples of three racial/ethnic groups (African
Americans, Hispanics, and Asian Americans).
PAGE 1
Caregiving in the U.S.
Appendix A: Detailed Methodology
B. Questionnaire Design
The questionnaire was drafted by BRS, NAC, AARP, and RSM, and drew from
the 1997 NAC/AARP study, Family Caregiving in the U.S. The questionnaire has
two components. The first comprises a screener used to a) identify caregiver(s) in
the household, and b) obtain a host of demographic information from a
randomly-selected respondent in all households contacted – regardless of the
presence of caregiving in the household. As described below, these data are
necessary to compile the base from which we estimate the proportion of
caregivers.
The second part of the questionnaire reflects the substantive questions
administered to all caregivers. For the state surveys, a shorter version of the
questionnaire was used. See Appendix D for the CATI versions of the
questionnaire.
After undergoing several iterative revisions, a final draft was programmed into a
CATI system and pre-tested. BRS participated in training the interviewers, who
were then monitored by members of the research team.
Based on the results of the pretest and a debriefing of the interviewers, changes
were made in question wording and length. The questionnaire was then
translated into Spanish for those respondents who preferred to be interviewed in
Spanish. BRS back-coded the Spanish questionnaire, and input from AARP
helped polish the final version. The interviews averaged 20 minutes in length for
the national study, and 10 minutes for the state surveys.
PAGE 2
Caregiving in the U.S.
Appendix A: Detailed Methodology
C. Sample
1. Sample design
The research design for the national study called for completing about 1,200
interviews with caregivers, including samples of at least 200 caregiver interviews
among African Americans, Hispanics, and Asian Americans. To achieve this
result in the most cost-effective way, we used a combination of RDD, surname
and targeted RDD sample frames. The supplemental samples (surname and
targeted RDD) were implemented after the main RDD sample was finished and
the number of remaining caregiver interviews in each subgroup needed to reach
200 interviews could be determined.
Soon after interviewing began with the supplemental samples, we noticed the
productivity was much lower than anticipated (based on 1997 incidence reports
for minorities in the NAC/AARP study) for the Asian surname, Hispanic
surname, and targeted Hispanic samples. For example, 3% of contacts from the
Asian surname sample produced an English-speaking caregiver. This low
incidence raised questions about previously reported incidence among these
minorities, was prohibitively expensive, and would take much longer to obtain
the necessary interviews than time permitted.
Based on these factors and the dearth of other supplemental sample, the research
team consulted with Knowledge Networks to draw on their panel of Americans
to complete the remaining Asian and Hispanic interviews. Knowledge Networks
has recruited the first online research panel that is designed to be representative
of the entire U.S. population. The panel is recruited using high quality
probability sampling techniques, and is not limited to current Web users or
computer owners. Knowledge Networks selects households using random digit
dialing (RDD) and provides selected households with free hardware and Internet
access for participating in online surveys.1
RDD sample was used exclusively for the states surveys, obtained from Survey
Sampling, Inc. (SSI).
2. Sample specifics for national study
The national RDD sample, also obtained from SSI, was stratified by geography to
generate a set of telephone numbers proportionate to the population. The
telephone numbers were then organized into replicates of 200 numbers each. SSI
1
For more information, see www.knowledgenetworks.com
PAGE 3
Caregiving in the U.S.
Appendix A: Detailed Methodology
provided the targeted RDD samples, which were drawn from telephone
exchanges in areas with higher than average (at least 30 percent density)
concentrations of Hispanics and African Americans. SSI also provided randomly
selected samples from a list of telephone numbers across the country linked to
Hispanic and Asian surnames.
Knowledge Network’s entire Asian sample was used for screening, and a
random sample of their Hispanic panelists was drawn for the study. While
panelists typically participate in online surveys, Knowledge Networks allowed
us to screen for caregivers using an online screener, but administer the
substantive questions to caregivers by telephone. Thus we were able to minimize
any mode effects in caregiver results.
A total of 1,247 caregivers were obtained from the following samples:
•
•
•
The main RDD sample produced 3,684 total interviews;
Targeted samples produced 1008 total interviews; and
Knowledge Network sample produced 1,447 total interviews.
From all of these interviews, we obtained interviews from 628 white, nonHispanic caregivers, 200 African-American caregivers, 204 Hispanic caregivers,
and 200 Asian-American caregivers.
3. Comparing data from different sample types for national study
Data from all samples were combined and weighted for final analysis. Prior to
that, the results from each sample were first compared with Census and the main
RDD sample, where appropriate, in effort to detect bias stemming from the
different frames utilized in the study. Comparative analyses were conducted in
two steps: 1) comparing sex, age, and race of all randomly-selected respondents;
and 2) comparing sex, age, and race of all caregiver respondents. For example,
all African-American randomly-selected respondents from the targeted RDD
over-sample were compared with their counterparts in the main RDD sample.
Additionally, demographics of the African American caregivers from the
targeted sample were compared with those obtained from the main RDD. These
comparisons indicted that the best representative sample would be a
combination of all, weighted to known population or household parameters,
depending on the level of analysis.
PAGE 4
Caregiving in the U.S.
Appendix A: Detailed Methodology
D. Field Methodology
Interviews from the main RDD national sample, the African American oversample, and the state surveys were conducted September 5 through October 14,
2003. The Hispanic and Asian over-samples continued through December 22,
2003.
A five-call design was used for interviewing so that every number was dialed at
least five times in an attempt to establish contact. Every soft refusal was
followed by another attempt to convert the refusal into a completed interview.
When contact was established, the interviewer asked to speak with the person in
the household aged 18 or older with the most recent birthday – our random
selection process. In the case of the racial/ethnic over-samples, race was also
determined for eligibility. The interviewer continued with the screener among all
randomly-selected respondents, and proceeded to the substantive portion of the
questionnaire if a caregiver was identified and agreed to participate.
For the Knowledge Networks panel, the screener portion of the questionnaire
was administered to all of the Asian households on their panel, and a randomly
selected sample of their Hispanic panelists. If a caregiver in the household was
identified, the name, phone number, and a convenient time to call were obtained.
If more than one caregiver was identified, Knowledge Networks randomly
selected one to participate in the telephone interview. Those data were then
forwarded to the field service to complete the caregiver interviews by telephone.
All caregiver interviews were conducted by telephone instead of online to
eliminate the chance of error due to mode effects. Data from all online screeners
and telephone interviews among Hispanics and Asians were collected.
PAGE 5
Caregiving in the U.S.
Appendix A: Detailed Methodology
E. Definition of a Caregiver
For the purposes of this study, a caregiver was defined using two mechanisms:
self report from a screening question, and verification through reporting
assistance with at least one ADL or IADL.
The screening question used for the randomly selected respondent to identify the
presence of a caregiver in the household is as follows:
In the last 12 months, have you or anyone in your household provided
unpaid care to a relative or friend 18 years or older to help them take care
of themselves? Unpaid care may include help with personal needs or
household chores. It might be managing a person's finances, arranging for
outside services, or visiting regularly to see how they are doing. This
person need not live with you. (IF YES: IS THAT YOU OR SOMEONE
ELSE IN THE HOUSEHOLD?)
If a caregiver did not report providing help with at least one ADL or IADL in our
series, the respondent was thanked for her/his participation and the interview
was terminated. For all analytic purposes in this study, these self-reported
caregivers are included as non-caregivers in the base of the 6,139 interviews.
PAGE 6
Caregiving in the U.S.
Appendix A: Detailed Methodology
F. Estimating Incidence of Caregiving
Estimating the number of caregivers and caregiving households for the national
study involves two major components. The first component is the collection of all
data necessary to make the estimates. This includes randomly selecting a
respondent from all households contacted and obtaining a) demographic data on
that individual; b) information about their household composition; c) the report
of a caregiver(s) living in the household; and d) interviewing the caregiver.
The second component of estimating incidence involves weighting our large
sample of data to a representative sample of the U.S. population and households,
based on 2003 U.S. Census population projections and 2003 household
projections from Harvard’s Joint Center for Housing Studies (JCHS), which used
U.S. Census 2000 household data to make their projections. From the weighted
data we can estimate the proportion of caregivers and caregiving households in
the U.S.
The same procedures were used for the state surveys, except we only make
estimates for the population in each state – not households. Therefore, household
data were not collected at this level, and we only created one weight based on
2003 population estimates in each state.
1. First Component: Collecting necessary data
The base from which to estimate caregiving in the U.S. – that is, a nationally
representative sample of adults and households – was established through
interviewing a randomly-selected respondent from each household contacted.
Pertinent demographic data were collected on all of these initial, randomlyselected respondents (age, race, and gender). Furthermore, data on the
household were gathered for the national study (size, family or non-family status
of household members, age of householder, and race of householder).
All randomly-selected respondents were also asked whether or not there was a
caregiver in the household. Three scenarios occurred based on the response from
this question:
ƒ
If the randomly-selected respondent reported no caregiver in the
household, the interview ended after obtaining the demographic data for
the individual and the household;
PAGE 7
Caregiving in the U.S.
Appendix A: Detailed Methodology
ƒ
If the randomly-selected respondent was a caregiver, the full
questionnaire was administered (only these initially selected respondents
were used to determine population incidence to estimate the size of the
caregiving population); and
ƒ
If the randomly-selected respondent was not a caregiver, but he/she
identified someone in the household as a caregiver, the interviewer asked
to speak with the caregiver after obtaining necessary demographic data
from the randomly-selected respondent. The secondary respondent in a
household was a caregiver by definition and was added to initial
caregiver respondents to determine household incidence to estimate the
number of households with caregivers. (Only one caregiver per
household was interviewed.)
The same procedure was used for the states, with the exception of not obtaining
household data. See Appendix D for the full CATI-formatted questionnaire with
all instructions.
Interviewing continued until we obtained our desired number of caregivers.
2. Second Component: Weighting sample and making estimates
Two weights were computed for estimating in the national study: a “population
weight” was used to estimate the proportion of caregivers in the population, and a
“household weight” was applied to estimate the proportion of caregiving
households in the US.
Estimating proportion of caregivers in the U.S. population
The population weight was a sex/age/race matrix based on the third quarter
(October) 2003 US population projections by the US Census.
After applying the population weight to all data, we looked at the proportion of
caregivers among the randomly-selected respondents in our sample. The result
shows that caregivers comprise an estimated 21% of the U.S. adult population.
The estimated number of caregivers in the US adult population is 44,443,800.
To estimate the incidence of caregivers helping recipients who are 50 or older,
the same procedure was used, except we looked at the proportion of caregivers
giving care to 50+ recipients among the randomly selected respondents in our
sample. An estimated 16% of the adult population, or 33,861,900 adults, care for
someone 50 or older.
PAGE 8
Caregiving in the U.S.
Appendix A: Detailed Methodology
Incidence of Caregivers in the U.S. Population2
2003 Census adult
Incidence X
pop. estimate
=
Caregivers
Caregivers of 50+
21%
16%
[211,637,100]
Estimated
number
44,443,800
33,861,900
The same procedures were used for estimating incidence in each of the seven
states.
Incidence of Caregivers in Population by State Over-Sample
2003 Census adult
Incidence X
pop. estimate
=
California
Delaware
Illinois
Kansas
Ohio
Virginia
Washington
18%
22%
18%
22%
21%
21%
19%
23,840,900
590,700
9,033,000
2,026,600
8,603,500
5,477,400
4,619,800
Estimated
number
4,291,400
130,000
1,625,900
445,900
1,806,700
1,150,300
877,800
Estimating proportion of caregiving households in the U.S.:
Household estimates were calculated only for the national study. The household
weight was based on the 2003 household projections derived from data supplied
by JCHS, and constructed from a matrix of household type (family or nonfamily), age, and race of householder collected from all randomly-selected
respondents.
Using the household weight, we calculated the proportion of all caregivers,
including those identified by the randomly-selected respondent who was not
him/herself a caregiver, among all households interviewed. We find 21% of U.S.
households contain a caregiver(s). The estimated number of caregiving
households in the U.S. is 22,901,800.
To estimate the incidence of households in which a caregiver(s) helps a recipient
who is 50 or older, the same procedure was used, except we looked at the
proportion of all caregivers giving care to 50+ recipients among the households
interviewed.
2
All estimates have been rounded to the nearest 100.
PAGE 9
Caregiving in the U.S.
Appendix A: Detailed Methodology
Incidence of Caregiving Households in the U.S.
Incidence X
Caregiving HH
Caregiving HH of
50+
21%
2003 Census
household estimate =
Estimated
number
22,901,800
[109,056,000]
17%
18,539,500
Estimating proportion of caregivers within racial/ethnic subgroups
The same procedures for making national estimates were used in calculating
incidence within racial/ethnic subgroups from the national study. To calculate
the incidence of caregivers within a group, the base was either randomly-selected
respondents within the designated race (for incidence in the population) or
households of the designated race (for incidence of households). See Tables 1 and
2 in the report for percentages and estimated numbers of caregivers and
caregiving households within each subgroup.
The following table reflects projections for 2003 total population and total
households in the U.S. within each of the following racial/ethnic subgroups:
Population and Household U.S. Census Projections for 2003
Adult Population N =
Households N =
Total
211,637,100
109,056,000
White, non-Hispanic
153,985,500
80,682,800
African American/Black
24,380,600
13,412,200
Hispanic
23,338,800
10,457,300
Asian-American
8,486,200
4,502,700
PAGE 10
Caregiving in the U.S.
Appendix A: Detailed Methodology
G. Weighting Substantive Results
As described above, a population weight and a household weight were created
to estimate the incidence of caregiving among the population and in households
in the U.S. For reporting the results of the national survey in this report among
the 1,247 caregivers interviewed, the data weighted by households was used for
two reasons. One is that the 1997 NAC/AARP caregiving study reported
household-level data and where questions were similar we desired to make as
valid a comparison as possible. The second reason is that the final caregiver
sample was derived from identifying caregivers in the household even if they
were not the initial, randomly-selected respondent. Hence, the sample is
representative of caregivers in U.S. households.
For the state results, the same population weight was applied to the substantive
results as was used to calculate incidence in the population of each state (each
state had its own weight).
The margin of error for the sample of 6,139 interviews is + 1.3. The margin of
sampling error for our caregiver sample of 1,247 is conservatively estimated at
+ 3.0 percentage points at the 95% level of confidence. Margin of sampling error
for state samples, ranging from approximately n=1,800 to n=2,100 ranges from +
2.2 to + 2.3. For the substantive results in the states surveys, based on the n=400
interviews in each, the margin of error is + 4.9 percentage points. Margin of error
will be larger for subgroups within each sample.
PAGE 11
Caregiving in the U.S.
Appendix A: Detailed Methodology
H. Cross Tabulations
For the national study, cross tabulations were run on the total 1,247 caregivers,
weighted by household. Cross tabulations were also run on each of the state
samples of caregivers, with similar variables.
The following tables show key demographic and behavioral variables for the
national study, followed by those used in the state studies.
PAGE 12
Caregiving in the U.S.
Appendix A: Detailed Methodology
Banner One: Descriptions of Variables
Heading
Labels
Description
Question Root
Gender
Male
Female
Gender of caregiver
Recorded gender
Race
Wht
White, Non-Hispanic
Race, from screener
Age
18-34
35-49
50-64
65+
Age of caregiver
Age of caregiver, from
screener
Education
<=HS
SME CLG
CLG+
High school or less
Some college, technical college
College degree or higher
Q94
Income
Less $30K
$30-$49K
$50-$100K
$100K Plus
Less than $30,000 household inc.
$30-$49K household income
$50K-$100K household income
$100K+ household income
Q95
Emp Care
Yes
Employed while caregiving
No
Not employed while caregiving
Either a) current
caregiver and currently
employed, or b) "yes" in
Q40
All others, not employed
while caregiving
Rec. Age
18-49
50+
Care recipient is 18-49 years old
Care recipient is 50+
Q3
Alzheim
Yes
Care recipient suffers from
Alzheimer's or other mental
confusion
Care recipient does not have
Alzheimer's or other mental
confusion
Identified in Q11, or Q12
Caregiver lives with recipient
Caregiver lives less than an hour
away from recipient
Caregiver lives one hour or more
from recipient
Q4
No
Distance
In HH
< HR
1HR+
Q12
PAGE 13
Caregiving in the U.S.
Appendix A: Detailed Methodology
Banner Two: Descriptions of Variables
Heading
Labels
Description
Question Root
Care Status
Prim
Primary caregiver
Sec
Secondary caregiver
Either "no", no one
else provides unpaid
help in Q31, or
respondent provides
most of the help in
Q33
Someone else
provides most of
unpaid help or splits
care in Q33
0-8
9-20
Less than 9 hours
9-20 hours
21+
21 or more, including "constant care"
Care Area
Urb
Sub
Rur
Caregiver lives in urban area
Caregiver lives in suburban area
Caregiver lives in rural area
Q9
Rec. Area
Urb
Sub
Rur
Care recipient lives in urban area
Care recipient lives in suburban
Care recipient lives in rural area
Q8 & Q9 (if care
recipient lives in
caregiver's
household)
Health
Exc
Very Good
Fair Poor
Caregiver self reports "excellent" health
Reports "very good" or "good" health
Reports "fair" or "poor" health
Q87
Outside
Resources
Yes
Reports using at least one of the
outside/formal services
Q71-Q78
No
Does not use any of these services
1
2
3
4
5
Each caregiver’s score on two indices,
an hours per week index and type of
care index (see tables below) was
summed, resulting in his/her
assignment to one of seven levels (2, 3,
4, 5, 6, 7, or 8). As in 1996, the seven
levels were collapsed into five, with
Level 1 being the least intense level of
caregiving, and Level 5 being the most
intense.
Hrs/Week
Level of Burden
Q27
Q27 and Q14-Q26
PAGE 14
Caregiving in the U.S.
Appendix A: Detailed Methodology
Level of Burden is the sum of the following two indices:
Hours of Care Index (Q27)
0-8 hours =
9-20 hours =
21-40 hours =
41+ or "constant care" =
1
2
3
4
Type of Care Index (Q14-Q26)
1 IADL / 0 ADLs =
2+ IADLs / 0 ADLs =
1 ADL (with or without IADLs) =
2+ ADLs (with or without IADLs) =
1
2
3
4
Level of Burden:
Combined score
Level 1
Level 2
Level 3
Level 4
Level 5
2, 3
4
5
6, 7
8
PAGE 15
Caregiving in the U.S.
Appendix A: Detailed Methodology
States’ Banner: Descriptions of Variables
Heading
Labels
Description
Question Root
Gender
Male
Female
Gender of caregiver
Recorded gender
Age
<50
50+
Age of caregiver
Age of caregiver,
from screener
Education
<=HS
Some Clg
Clg+
High school or less
Some college, technical college
College degree or higher
Q94
Income
Less $50K
$50K Plus
Less than $50,000 household inc.
$50K+ household income
Q95
Emp Care
Yes
Employed while caregiving
No
Not employed while caregiving
Either a) current
caregiver and
currently employed,
or b) "yes" in Q40
All others, not
employed while
caregiving
Rec. Age
18-49
50+
Care recipient is 18-49 years old
Care recipient is 50+
Q3
Rec. Area
URB
SUB
RUR
Care recipient lives in urban area
Care recipient lives in suburban area
Care recipient lives in rural area
Q8
Out Res.
Yes
Reports using at least one of the
outside/formal services
Does not use any of these services
Q71-Q77
Had choice in taking on responsibility of
caregiving
Did not have choice in taking on
responsibility of caregiving
Q59
No ADLs/1 or more IADLs
1 or more ADLs (with or without IADLs)
Q14-Q26
No
Choice Care
Yes
No
Type of Care
No ADLs
1+ ADLs
PAGE 16
Caregiving in the U.S.
Appendix A: Detailed Methodology
I. Regression Analysis
Multiple linear regression investigates the extent to which independent variables
(e.g., age, income, race, sex) influence a dependent variable(s) (e.g., hours per
week providing care). Regression also helps determine whether a statistically
significant influence of an independent variable on a dependent variable
indicates a real or superficial relationship by controlling for other independent
variables.
Regression analysis was conducted to help determine what factors influence the
emotional stress of caregivers, as indicated by a five-point scale in Q57. The
following independent variables were used in the model:
Gender
Caregiver age
Education
Income
Distance from recipient
Caregiver status (primary or secondary)
Self-reported health
Caring for someone with Alzheimer’s or dementia
Feeling a choice in taking on caregiving responsibilities
Level of Burden Index
Regressions were also run against feeling the caregiving situation has worsened
one’s health (Q88). The following independent variables were used:
Gender
Caregiver age
Education
Income
Distance from recipient
Caregiver status (primary or secondary)
Caring for someone with Alzheimer’s or dementia
Feeling a choice in taking on caregiving responsibilities
Level of Burden Index
PAGE 17
Caregiving in the U.S.
Appendix A: Detailed Methodology
J. Response Rate
The response and refusal rates reported below are based on the Standard
Definitions of the American Association for Public Opinion Research (AAPOR)
for the final dispositions of cases codes and outcome rates for RDD telephone
surveys.3 Information regarding these calculations can be found on AAPOR’s
website (www.aapor.org).
The overall response rate for the national study is 19%, based on AAPOR’s
Response Rate 3 formula: I/(I+P) + (R+NC+O) + e(UH+UO).4 The response rate
is higher for the RDD portion of the study (27%), and lower for each of the oversamples conducted from surname and targeted samples (ranges from 5% to
17%).
3
The American Association for Public Opinion Research. 2000. Standard Definitions: Final Dispositions
of Case Codes and Outcome Rates for Surveys. Ann Arbor, Michigan: AAPOR.
4
Interviews from Knowledge Networks are not included in the response rate calculation because
dispositions for online screening are not comparable.
PAGE 18
Caregiving in the U.S.
Appendix B: Topline Results from the National Study
Appendix B: Topline Results
From a National Survey of Caregivers 18 and Older
for National Alliance for Caregiving & AARP
January 2004
Interviewing conducted September 5 through December 22, 2003, among N = 1,247
caregivers 18 and older in the United States.
Screening questions, used to identify caregiver respondents at the outset of the
interviews for the national study, show the following:
In the U.S.
Percent of adults who are caregivers
Number of caregivers
21%
44,443,800
Percent of households with caregiver(s)
Number of households with caregiver(s)
21%
22,901,800
Percents may add up to 99% or 101% due to rounding. Data are weighted by gender, age, and
race. Margin of sampling error is + 2.8 percentage points. * indicates less than 1%, and -indicates zero.
PAGE 1
Caregiving in the U.S.
Appendix B: Topline Results from the National Study
This survey is part of an important national study conducted by AARP and the National Alliance
for Caregiving. We really appreciate your participation. IF HELPFUL, INTERVIEWER MAY
TELL RESPONDENT: This is a national survey, and although individual answers are
confidential, the results from the overall survey will be published. If you’d like, we could send
you a copy of the final report.
1a. Are you currently providing unpaid
help to a relative or friend 18 years or
older, or, was this something you did in
the past 12 months but are no longer
doing?
CURRENTLY
PAST 12 MO.
DK/REF
66%
34
*
1. How many adults [do you provide
this care for? / did you provide this care
for in the past 12 months?]
1
2
3+
DK/REF
69%
22
8
1
Mean: 1.7adults
IF ONE PERSON: Now, I’d like to ask you some questions about the adult for whom
you [provide/provided] care. IF MORE THAN ONE: Let’s focus on the adult for whom
you [provide/provided] the most assistance.
1b. What [is/was] this person’s
relationship to you?
1c&1d. Gender of care recipient. IF NOT
KNOWN FROM Q1b RESPONSE: ASK:
Would you mind telling me if your (__)
is male or female?
SPOUSE
MOTHER
FATHER
MOTHER-IN-LAW
FATHER-IN-LAW
SON
DAUGHTER
BROTHER
SISTER
BROTHER-IN-LAW
SISTER-IN-LAW
GRANDMOTHER
GRANDFATHER
GRANDPAR.-IN-LAW
AUNT/UNCLE
OTHER RELATIVE
FRIEND/NEIGHBOR
PARTNER
COUSIN
DK/REF
6%
28
8
7
2
3
3
2
3
1
*
9
3
1
5
1
16
1
1
1
MALE
FEMALE
DK/REF
31%
65
4
PAGE 2
Caregiving in the U.S.
Appendix B: Topline Results from the National Study
2. [Is your (__) currently/ Was your
(__)] widowed, married, living with a
partner, separated, divorced, or single –
that is never been married?
3. How old [is/was] your (__)?
PROMPT: Your best estimate is fine.
Mean age is 66.
4. [Does/Did] your (__) live in your
household, within twenty minutes of
your home, between 20 minutes and an
hour from your home, a one to two hour
drive from your home, or more than
two hours away?
5. IF NOT IN HOUSEHOLD, DK, OR
REF IN Q4: On average, how often
[do/did] you visit your (__)? More than
once a week, once a week, few times a
month, once a month, few times a year,
or less often? Base N = 924
WIDOWED
MARRIED
PARTNER
SEPARATED
DIVORCED
SINGLE
DK/REF
42%
27
2
3
12
14
*
18-29
30-49
50-64
65-74
75-84
85-89
90+
DK/REF
8%
13
16
19
24
11
9
1
HOUSEHOLD
20 MIN AWAY
20 MIN TO 1 HR
1 TO 2 HRS
2 HRS +
DK/REF
24%
42
19
5
10
*
> ONCE A WEEK
ONCE A WEEK
FEW TIMES A MO
ONCE A MONTH
FEW TIMES A YR
LESS OFTEN
DK/REF
56%
18
11
5
7
2
1
PAGE 3
Caregiving in the U.S.
Appendix B: Topline Results from the National Study
IN OWN HOME
OTHERS’ HOME
IND. LVNG/ RTRMNT
ASSISTED LVING
NURSING HOME
OTHER
DK/REF
72%
11
4
6
7
*
*
ALONE
SPOUSE
CHILDREN
OTHER FAMILY
FRIENDS
AID/ HOUSEKPR
SOMEONE ELSE
DK/REF
47%
26
11
12
3
3
1
*
8. IF NOT IN HOUSEHOLD IN Q4:
[Does/Did] your (__) live in an urban,
suburban, or rural area? Base N = 925
URBAN
SUBURBAN
RURAL AREA
DK/REF
33%
38
27
2
9. And do you live in an urban,
suburban or rural area?
URBAN
SUBURBAN
RURAL AREA
DK/REF
29%
39
29
3
10. [Is/Was] your (__) frail, sick, disabled, or none of
these? MULTIPLE RESPONSE
FRAIL
SICK
DISABLED
NONE OF THESE
DK/REF
28%
26
35
28
*
6. IF NOT IN HOUSEHOLD, DK, OR
REF IN Q4: [Does/Did] your (__) live in:
his or her own home, someone else’s
home, an independent living or
retirement community, in an assisted
living facility where some care may be
provided, a nursing home or facility,
somewhere else? Base N = 924
7. IF NOT IN HOUSEHOLD, DK, OR REF
IN Q4 OR NOT IN NURSING HOME IN
Q6: [Does/Did] your (__) live: (MULTIPLE
PUNCH OKAY) alone, with her/his
spouse, with her/his grown children, with
other family members, with friends, with an
aid, housekeeper, or other staff, or with
someone else? Base N = 869
PAGE 4
Caregiving in the U.S.
Appendix B: Topline Results from the National Study
11. What would you say [is/was] the main problem or illness your (__) [has/had]?
PRECODED OPEN END: ACCEPT ONE ANSWER IF “DISABLED”, PROBE: What kind
of disability would that be?
AGING
DIABETES
CANCER
ALZHEIMER’S
HEART DISEASE
MOBILITY (CAN’T GET AROUND)
STROKE
ARTHRITIS
BLINDNESS/VISION LOSS
LUNG DISEASE/EMPHYSEMA
PARKINSON’S
SURGERY
AMPUTEE
HIGH BLOOD PRESSURE/HYPERTENSION
BROKEN BONES
DEAFNESS/HEARING LOSS
FEEBLE, UNSTEADY, FALLING
MENTAL RETARDATION
MENTAL/EMOTIONAL ILLNESS/DEPRESSION
OSTEOPEROSIS
PARAPLEGIA
NEUROLOGICAL PROBLEM/DISORDER
MS
KIDNEY
FINANCES
DRUG/ALCOHOL PROBLEMS
BACK PROBLEMS
AIDS
OTHER (SPECIFY)
DON’T KNOW/REFUSE
12. IF ALZHEIMER’S/
CONFUSION/DEMENTIA NOT
MENTIONED: [Does/Did] your (__)
suffer from Alzheimer’s or other mental
confusion? Combined with “Alzheimer’s”
responses in Q11.
12%
8
8
6
7
5
5
4
3
2
1
2
1
1
2
*
1
1
7
1
1
1
1
1
2
1
1
*
9
4
YES
NO
DK/REF
23%
76
1
PAGE 5
Caregiving in the U.S.
Appendix B: Topline Results from the National Study
13. For how long [have you been
providing/did you provide] help to
your (__)? PROMPT: Your best estimate
is fine. PRE-CODED OPEN END
Mean: 4.3 years
OCCASION.
< 6 MONTHS
6 MOS – 1 YR
1-4 YEARS
5-9 YEARS
10 YEARS+
DK/REF
5%
16
18
31
15
14
1
I’m going to read a list of kinds of help, which might be provided to a person, if the
person cannot do this by him or herself. For each, just tell me if you [provide/provided]
this kind of help. [Do/Did] you help your (__)....
YES
NO
DK/REF
14. Get in and out of beds and chairs
36%
64
--
15. Get dressed
29%
71
*
16. Get to and from the toilet
23%
77
--
17. Bathe or shower
26%
74
--
18. Dealing with incontinence or diapers
16%
84
*
19. By feeding him or her
18%
82
--
YES
NO
DK/REF
20. Giving medicines, pills, or injections
41%
59
--
21. Managing finances, such as paying bills, or filling
out insurance claims
64%
36
--
22. Grocery shopping
75%
25
*
24. Housework, such as doing dishes, laundry, or
straightening up
69%
31
--
24b. Preparing meals
59%
42
--
25. Transportation, either by driving him or her, or
helping your (__) get transportation
82%
18
*
26. Arranging or supervising services from an agency,
such as nurses or aides
30%
70
--
[Do/Did] you provide help for your (__) with:
IF NO/DK/REF TO ALL Q14-Q26: TERMINATE
PAGE 6
Caregiving in the U.S.
Appendix B: Topline Results from the National Study
27. Thinking now of all the kinds of
help you [provide/provided] for your
(__), about how many hours [do/did]
you spend in an average week, doing
these things?
<1
1-8
9-20
21-39
40+
DK/REF
4%
44
23
8
17
5
28. [Does/Did] your (__) take any
prescription medicine?
YES
NO
DK/REF
85%
12
2
29. IF YES IN Q28: Would you say your
(__) [needs/needed] someone to oversee
giving him/her medicine in the right
amount and on time, or that he/she
[manages/had managed] this well on
his/her own? Base N = 1049
NEEDS HELP
MANAGES
DK/REF
45%
55
1
30. IF YES IN Q28: Do you feel you
[know/knew] as much as you
[need/needed] to about the prescription
medicine your (__) [takes/took], or that
you [need/needed] to know more about
it? Base N = 1049
KNOW AS MUCH
KNOW MORE
DK/REF
76%
22
2
31. Has anyone else provided unpaid help to
your (__) during the last 12 months?
YES
NO
DK/REF
59%
37
3
PAGE 7
Caregiving in the U.S.
Appendix B: Topline Results from the National Study
32a. IF YES IN Q31: What relationship
[are/were] they to your (__)?
MULTIPLE RESPONSE
IF “CHILDREN”, PROBE: Would that
be (__)’s son or daughter or both?
Base N = 742
33. IF YES IN Q31: Who would you
consider to be the person who
[provides/provided] most of the unpaid
care for your (__): you yourself, or
someone else? Base N = 742
SPOUSE/FORMER
MOTHER
FATHER
MOTHER/FATHER-IN-LAW
SON
DAUGHTER
SON/DAUGHTER-IN-LAW
BROTHER
SISTER
BROTHER/SISTER-IN-LAW
NIECE/NEPHEW
GRANDSON/GRANDDGHTR
OTHER RELATIVE
ALL FAMILY
NON-REL./FRIEND/NEIGH.
VOLUNTEER
OTHER (SPECIFY)
DK/REF
SELF
SOMEONE ELSE
SPLIT 50-50 (VOL.)
DK/REF
7%
6
1
*
26
42
6
1
5
*
5
9
3
4
11
1
1
1
34%
55
10
1
IF NOT IN NURSING HOME: During the last 12 months, did your (__) receive paid
help from any of the following – regardless of who paid for it. First: Base N = 1191
YES
NO
DK/REF
34. An aide or nurses hired through an
agency or service?
23%
74
3
35. An aide or nurse hired independently–
that is not through an agency or service?
7%
90
3
36. A housekeeper hired to clean or cook?
20%
80
*
37. Any other people who are paid to help
her/him?
12%
86
2
38. IF YES TO ANY IN Q34-Q37 ABOVE: Who
would you say [provides/provided] more of
your (__)’s care: you, other unpaid helpers, or
paid helpers such as nurses or aides? Base
N = 468
RESPONDENT
OTHER UNPAID
PAID HELPERS
DK/REF
44%
34
19
3
PAGE 8
Caregiving in the U.S.
Appendix B: Topline Results from the National Study
39. Now I have a few questions about you.
Are you currently working full time, working
part time, a student, disabled, retired, a
homemaker, unemployed and looking for
work, or something else?
40. IF NOT CURRENTLY EMPLOYED OR A PAST
CAREGIVER: [Have you been employed at any
time since you began helping your (__)? / Were
you employed at any time while you were helping
your (__)]? Base N = 782
FULL TIME
PART TIME
RETIRED
SOMETHING ELSE
DK/REF
48%
11
16
*
*
YES
NO
DK/REF
59%
41
*
IF WORKING WHILE A CAREGIVER: In your experience as both a worker and a
caregiver, did you ever: Base N = 935
YES
NO
DK/REF
41. Have to go in late, leave early, or take time off
during the day to provide care
57%
43
*
42. Have to take a leave of absence
17%
83
*
43. Have to go from working full-time to part-time,
or taken less demanding job
10%
90
*
44. Have to turn down a promotion
4%
95
1
45. Lose any of your job benefits
5%
95
1
46. Have to give up working entirely
6%
94
--
47. Choose early retirement
3%
97
*
52. IF NOT SPOUSE: How much of
your money would you estimate you
[spend/spent] in a typical month for
groceries, medicines, or other kinds of
cash support for your (__)’s care if any?
Your best estimate is fine. Base N = 1180
$0
$1-$50
$51-$100
$101-$500
$501+
DK/REF
34%
15
11
25
3
11
Mean for those who make financial contributions:
$200 per month
PAGE 9
Caregiving in the U.S.
Appendix B: Topline Results from the National Study
There may have been other ways in which providing care to your (__) has affected your
life. As a caregiver,
YES
NO
DK/REF
53. [Do/Did] you have less time for friends or
other family members than before?
51%
48
1
54. [Do/Did] you have to give up vacations,
hobbies, or your own social activities?
44%
56
*
55. [Do/Did] you have to get less exercise than
before?
26%
74
*
56. Think of a scale from 1 to 5, where 1
is not a strain at all and 5 is very much
of a strain. How much of a physical
strain would you say that caring for
your (__) [is/was] for you?
1 NOT A STRAIN
2
3
4
5 VERY MUCH
DK/REF
57. Using the same scale from 1 to 5,
where 1 is not at all stressful and 5 is
very stressful, how emotionally stressful
would you say that caring for your (__)
[is/was] for you?
1 NOT STRESSFUL
2
3
4
5 VERY STRESSFUL
DK/REF
58. Using the same scale from 1 to 5,
where 1 is no hardship at all and 5 is a
great deal of hardship, how much of a
financial hardship would you say that
caring for your (__) [is/was] for you?
1 NO HARDSHIP
2
3
4
5 GREAT DEAL
DK/REF
62%
14
11
5
7
*
YES
NO
DK/REF
59%
39
1
59. We have been talking about the help
you [provide/provided] for your (__).
Do you feel you had a choice in taking
on this responsibility for caring for your
(__)?
44%
23
17
8
7
1
27%
17
20
16
18
1
PAGE 10
Caregiving in the U.S.
Appendix B: Topline Results from the National Study
I’m going to read a list of ways that caregivers such as yourself have coped with the
demands of caregiving. For each one, please tell me whether you have used any of
these. [Have/Did] you ever [tried/try] to cope with caregiving stress by:
YES
NO
DK/REF
60. Talking with or seeking advice from friends or
relatives?
61%
39
*
61. Exercising or working out?
41%
59
*
62. Taking any kind of medication
12%
88
*
63. Talking to a professional or spiritual counselor
27%
73
*
65. Praying
73%
27
*
66. Going on the Internet to find information
33%
67
*
67. Reading about caregiving in books or other materials
44%
56
*
IF YES IN Q66: Which of the following things have you looked for on the Internet? All
Base N = 431
YES
NO
DK/REF
68. Information about your (__)’s condition and
treatment?
88%
11
*
69. Information about services available for people like
your (__)?
55%
45
--
70. Support or advice from people with similar
caregiving experiences?
39%
61
--
YES
NO
DK/REF
71. [Requested/Request] information about how to get
financial help for your (__)?
25%
75
*
72. [Taken/Take] part in support groups for caregivers?
7%
92
*
73. [Used/Use] a respite service to take care of your (__)
to free up your time?
5%
93
3
5%
95
*
75. [Helped/Help] enroll your (__) in a recreation
program or camp?
8%
92
*
77. [Had/Have] an outside service such as Meals on
Wheels deliver meals to your (__)’s home?
11%
89
*
78. [Had/Have] an outside service provide
transportation for your (__) instead of you providing the
transportation?
18%
82
*
In your experience as a caregiver, [have/did] you ever....
74. [Helped/Help] enroll your (__) in Adult Day Care?
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Caregiving in the U.S.
Appendix B: Topline Results from the National Study
Have you done or obtained any of these types of things to make it easier to care for your
(__):
YES
NO
DK/REF
79. Had modifications made in the house or apartment
where your (__) [lives/lived] to make things easier for your
(__)?
39%
61
*
80. Obtained formal training of some sort about how to
care for a person with your (__)’s needs?
18%
81
*
81. Obtained a bathing bench, magnifying lens for reading,
or other helpful devices for your (__)?
40%
60
1
As a caregiver, on which of the following do you feel you [need/needed] more help or
information:
YES
NO
DK/REF
82a. Keeping the person I care for safe at home
30%
69
1
82b. Managing challenging behaviors, such as wandering
14%
85
1
82c. Easy activities I can do with the person I care for
27%
73
*
82d. Managing incontinence or toileting problems
11%
89
*
82e. Moving or lifting the person I care for
16%
84
*
82f. Balancing my work and family responsibilities
29%
71
1
82g. Finding time for myself
35%
64
1
82h. Choosing an assisted living facility
13%
87
*
82i. Choosing a nursing home
8%
92
1
82j. Choosing a home care agency
13%
86
*
82k. How to talk with doctors and other healthcare
professionals
22%
78
*
82l. Managing my emotional and physical stress
29%
70
1
82m. Making end-of-life decisions
20%
80
1
82n. Finding non-English language educational
materials
5%
95
*
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Caregiving in the U.S.
Appendix B: Topline Results from the National Study
83. If you were looking for information
about some aspect of helping take care
of your (__), where would you turn?
MULTIPLE RESPONSE
INTERNET
DOCTOR
FAMILY/ FRIEND
HEALTH PROFESSIONALS
BOOKS, MAG., LIBRARY
GOV’T AGENCY
SENIOR CITIZEN’S CENTER
CHURCH/REL. ORG.
AGING ASSOC./GRP/ORG
EMPLOYER
SUPPORT GRPS/PPL LIKE ME
HOSPITAL/CLINIC
OTHER
DK/REF
29%
28
15
10
7
5
3
3
2
1
1
1
2
10
And finally, just a few questions for classification purposes only....
87. How would you describe your own
health? Is it excellent, very good, good,
fair, or poor?
EXCELLENT
VERY GOOD
GOOD
FAIR
POOR
DK/REF
25%
30
28
12
5
*
88. How would you say taking care of
your (__) has affected your health? Has
made it better, not affected it, or made it
worse?
BETTER
NO EFFECT
WORSE
DK/REF
9%
74
15
2
89. Are you currently:
Married
Living w/ a partner
Widowed
Separated
Divorced
Single, never married
DK/REF
56%
6
6
3
11
18
*
91. Did you ever serve on active duty in
the US Armed Forces? PROBE: Army,
Navy, Air Force, Marines, Coast Guard
or Women’s Armed Forces
YES
NO
DK/REF
14%
86
*
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Caregiving in the U.S.
Appendix B: Topline Results from the National Study
92. Did your (__) serve in the US Armed
Forces?
93. Are there any children or
grandchildren living in your household
under 18 years of age?
94. What is the last grade of school
you completed?
YES
NO
DK/REF
17%
82
1
YES
NO
DK/REF
37%
62
*
< THAN HS
HS GRAD
SOME COLL
TECH SCHL
COLL GRAD
GRAD SCHL/ WORK
DK/REF
5%
29
27
3
22
13
*
< $15K
$15K-$30K
$30K-$50K
$50K-$75K
$75K-$100K
$100K+
DK/REF
8%
17
26
18
9
15
9
Gender
MALE
FEMALE
39%
61
Race
WHITE
BLACK
HISPANIC
ASIAN
OTHER
73%
12
10
4
*
Age
18-24
25-34
35-44
45-54
55-64
65-74
75+
11%
15
22
23
18
9
4
95. Last year, what was your total
annual household income from all
sources, before taxes?
PAGE 14
Caregiving in the U.S.
Appendix C: CATI Questionnaire
Appendix C: CATI Questionnaire
Intro
Hello. My name is _______ and I am an interviewer with Princeton Data Source.
We are conducting a public opinion survey about important issues facing us
today. We are not selling anything or raising money. The survey is completely
confidential. (IF NEEDED REASSURE RESPONDENT: This research company
will never try to sell you anything. IF ASK: The survey takes about 20 minutes.)
May I please speak to the person 18 years old or older in your household who had
a birthday most recently? (IF NECESSARY ARRANGE FOR A CALL BACK
AND RECORD DATE AND TIME. REPEAT INTRO. AS NECESSARY)
Screen
S1. In the last 12 months, have you or anyone in your household provided
unpaid care to a relative or friend 18 years or older to help them take care of
themselves? Unpaid care may include help with personal needs or household
chores. It might be managing a person's finances, arranging for
outside services, or visiting regularly to see how they are doing. This
person need not live with you. (IF YES: Is that you or someone else?)
IF R. IS UNSURE, RE-READ QUESTION.
IF R. ASKS “DOES GIVING MONEY COUNT?”, ASK: Aside from giving money,
do you provide any other type of unpaid care to help them take care of
themselves, such as help with personal needs, household chores, arranging for
outside services, or other things? IF NOTHING OTHER THAN $, CODE “NO”
YES -- PERSON ON PHONE IS CAREGIVER
YES -- ANOTHER PERSON IN HOUSEHOLD
NO
DK (TERMINATE)
REF (TERMINATE)
PAGE 1
Caregiving in the U.S.
Appendix C: CATI Questionnaire
S2. Just to be sure I speak to people of all ages, how old were you on your last
birthday?
____ (GO TO S2b)
DK
REF
S2b. IF DK/REFUSE: Well are you between:
18-24
25-34
35-44
45-54
55-64
65-74, or
75 or older?
DK (TERMINATE)
REF (TERMINATE)
S3. Are you of Hispanic origin or background?
YES
NO
DK
REF
S4. Would you say you are white, black or African American, Asian or Pacific
Islander, or something else?
WHITE
BLACK
ASIAN
OTHER (SPECIFY____)
DK (TERMINATE)
REF (TERMINATE)
S5. RECORD GENDER
MALE
FEMALE
PAGE 2
Caregiving in the U.S.
Appendix C: CATI Questionnaire
S6. How many people including children live in the household?
1 -- LIVES ALONE (GO TO S13a)
_____
DK (TERMINATE)
REF (TERMINATE)
S7. Are you the person in the household who owns or rents the residence? [WE
WANT THE PERSON WHO PAYS THE MORTGAGE OR WHOSE NAME IS
ON THE LEASE]
YES
NO (GO TO S9)
DK (TERMINATE)
REF (TERMINATE)
S8. IF HOUSEHOLDER: Are you related by marriage, blood, or adoption to
anyone in the household?
YES (GO TO S13a)
NO (GO TO S13a)
DK (TERMINATE)
REF (TERMINATE)
S9. Thinking about the person who owns/rents the house, please tell me if that
person is related to anyone in the household by marriage, blood, or adoption? [IF
MORE THAN ONE PERSON OWNS/RENTS WE WANT THE PERSON WHO
PAYS THE MORTGAGE OR WHOSE NAME IS ON THE LEASE]
YES
NO
DK (TERMINATE)
REF (TERMINATE)
S10. Thinking about the person who owns/rents the house, please tell me how
old they are? PROMPT: Your best estimate is fine.
____
DK (TERMINATE)
REF (TERMINATE)
PAGE 3
Caregiving in the U.S.
Appendix C: CATI Questionnaire
S11. As far as you know, is the person of Hispanic origin or background?
YES
NO
DK
REF
S12. Would you say they are white, black or African American, Asian or Pacific
Islander, or something else?
WHITE
BLACK
ASIAN
OTHER (_______)
DK (TERMINATE)
REF (TERMINATE)
S13a.
ƒ IF “NO” CAREGIVER IN S1: END INTERVIEW – TERMINATE AND
THANK YOU.
ƒ IF “INITIAL RESPONDENT CAREGIVER”: GO TO Q1a.
ƒ IF “INITIAL RESPONDENT NOT CAREGIVER, BUT CAREGIVER IN
HH”:
S13. May I please speak to the person in your household who is providing
unpaid care to a relative or friend 18 years or older? IF MORE THAN ONE
CAREGIVER ASK TO SPEAK TO THE ONE WITH THE LAST BIRTHDAY.
YES
NOT AVAILABLE (ARRANGE CALLBACK)
NO (CALL BACK TO CONVERT)
DK (CALL BACK TO CONVERT)
REF (CALL BACK TO CONVERT)
CAREGIVER ON PHONE:
S14. Hello. We are conducting a survey about caregiving, by which I mean
providing unpaid care to a relative or friend 18 years or older to help them take
care of themselves. Caregiving may include help with personal needs or
household chores. It might be managing a person’s finances, arranging for
outside services, or visiting regularly to see how they are doing. This person
need not live with you.
PAGE 4
Caregiving in the U.S.
Appendix C: CATI Questionnaire
S15. Just to confirm, in the last 12 months, have you provided this kind of unpaid
help to a relative or friend who is 18 years or older —or are doing so currently?
YES
NO (Is there someone else in the household who is a caregiver? IF YES: ASK
TO SPEAK TO THE PERSON, THEN RETURN TO S14. OTHERWISE
TERMINATE.)
DK (CALL BACK TO CONVERT)
REF (CALL BACK TO CONVERT)
S16. Just to be sure I speak to people of all ages, how old were you on your last
birthday?
_____
DK
REF
S16b. IF DK/REFUSE: Well are you between:
18-24
25-34
35-44
45-54
55-64
65-74, or
75 or older?
DK (TERMINATE)
REF (TERMINATE)
S17. Are you of Hispanic origin or background?
YES
NO
DK
REF
S18. Would you say you are white, black or African American, Asian or Pacific
Islander, or something else?
WHITE
BLACK
PAGE 5
Caregiving in the U.S.
Appendix C: CATI Questionnaire
ASIAN
OTHER (SPECIFY____)
DK (TERMINATE)
REF (TERMINATE)
S19. RECORD GENDER
GO TO Q1a.
ALL CAREGIVERS:
Characteristics of relationship
This survey is part of an important national study conducted by AARP and the
National Alliance for Caregiving. We really appreciate your participation.
IF HELPFUL, INTERVIEWER MAY TELL RESPONDENT: This is a national
survey, and although individual answers are confidential, the results from the
overall survey will be published. If you’d like, we could send you a copy of the
final report.
1a. Are you currently providing unpaid help to a relative or friend 18 years or
older, or, was this something you did in the past 12 months but are no longer
doing?
CURRENTLY
PAST 12 MONTHS
DK
REF
IF CURRENTLY: USE PRESENT TENSE, FIRST VERB IN [BRACKETS]
IF PAST 12 MONTHS: USE PAST TENSE, SECOND VERB IN [BRACKETS]
1. How many adults do you provide this care for? / did you provide this care for
in the past 12 months?]
1
_____
DK
REF
IF ONE PERSON: Now, I’d like to ask you some questions about the adult for
whom you [provide/provided] care.
PAGE 6
Caregiving in the U.S.
Appendix C: CATI Questionnaire
IF MORE THAN ONE: Let’s focus on the adult for whom you
[provide/provided] the most assistance.
Q1b. What [is/was] this person’s relationship to you? PRE-CODED OPEN END
SPOUSE
MOTHER
FATHER
MOTHER-IN-LAW
FATHER-IN-LAW
SON
DAUGHTER
BROTHER
SISTER
BROTHER-IN-LAW
SISTER-IN-LAW
GRANDMOTHER
GRANDFATHER
GRANDPARENT-IN-LAW
AUNT/UNCLE
OTHER RELATIVE (SPECIFY_____)
FRIEND/NON-RELATIVE/NEIGHBOR
COMPANION/PARTNER
DK
REFUSE
Q1c. IF “SPOUSE,” “AUNT/UNCLE,” “GRANDPARENT IN-LAW”: RECORD
GENDER OF THE RESPONDENT’S (Q1B CODE):
MALE
FEMALE
DK
Q1d. IF “OTHER RELATIVE”, “FRIEND”, “COMPANION”: Would you mind
telling me if your (Q1B CODE) is male or female?
MALE
FEMALE
REF
PAGE 7
Caregiving in the U.S.
Appendix C: CATI Questionnaire
2. [Is your (Q1B CODE) currently/Was your (Q1B CODE)] widowed, married,
living with a partner, separated, divorced, or single – that is never been married?
WIDOWED
MARRIED
LIVING WITH A PARTNER
SEPARATED
DIVORCED
SINGLE
DK
REF
3. How old [is/was] your (Q1B CODE)? PROMPT: Your best estimate is fine.
______
DK
REF
4. [Does/Did] your (Q1B CODE) live....
In your household, (GO TO Q9)
Within twenty minutes of your home,
Between 20 minutes and an hour from your home,
A one to two hour drive from your home, or
More than two hours away?
DK (GO TO Q7)
REF (GO TO Q7)
5. IF NOT IN HOUSEHOLD: On average, how often [do/did] you visit your
(Q1B CODE)? More than once a week, once a week, few times a month, once a
month, few times a year, or less often?
MORE THAN ONCE A WEEK
ONCE A WEEK
FEW TIMES A MONTH
ONCE A MONTH
FEW TIMES A YEAR
LESS OFTEN
DK
REF
6. IF NOT IN HOUSEHOLD: [Does/Did] your (Q1B CODE) live in:
PAGE 8
Caregiving in the U.S.
Appendix C: CATI Questionnaire
His or her own home,
Someone else’s home,
An independent living or retirement community,
In an assisted living facility where some care may be provided,
A nursing home or facility, (GO TO Q8)
Or somewhere else? (SPECIFY _________)
DK
REF
7. [Does/Did] your (Q1B CODE) live: MULTIPLE PUNCH
Alone,
With her/his spouse,
With her/his grown children,
With other family members,
With friends,
With an aide, housekeeper, or other staff,
Or with someone else? (SPECIFY _________)
DK
REF
8. [Does/Did] your (Q1B CODE) live in an urban, suburban, or rural area?
URBAN
SUBURBAN
RURAL AREA
DK
REF
9. And do you live in an urban, suburban, or rural area?
URBAN
SUBURBAN
RURAL AREA
DK
REF
PAGE 9
Caregiving in the U.S.
Appendix C: CATI Questionnaire
Characteristics of recipient
10. [Is/Was] your (Q1B CODE) frail, sick, disabled, or none of these? (ACCEPT
MULTIPLE RESPONSES)
FRAIL
SICK
DISABLED
NONE OF THESE
DK
REF
11. What would you say [is/was] the main problem or illness your (Q1B CODE)
[has/had]? PRECODED OPEN END: ACCEPT ONE ANSWER
IF “DISABLED”, PROBE: What kind of disability would that be?
AIDS
ALZHEIMER’S/CONFUSION/DEMENTIA/FORGETFULNESS (GO TO Q13)
AMPUTEE
ARTHRITIS
BLINDNESS/VISION LOSS, CAN’T SEE WELL
BLOOD PRESSURE/HYPERTENSION
BOREDOM, NOTHING TO DO
BROKEN BONES
CANCER
DEAFNESS/HEARING LOSS
DIABETES
FEEBLE, UNSTEADY, FALLING
HEART DISEASE
LUNG DISEASE, EMPHYSEMA
MENTAL RETARDATION
MENTAL ILLNESS, EMOTIONAL ILLNESS, DEPRESSION
MOBILITY (CAN’T GET AROUND)
OLD AGE, JUST OLD
OSTEOPOROSIS
PARAPLEGIA
PARKINSON’S
SPEAKING, CAN’T SPEAK
STROKE
OTHER (SPECIFY____)
_________
DK
PAGE 10
Caregiving in the U.S.
Appendix C: CATI Questionnaire
REF
12. IF ALZHEIMER’S/CONFUSION/DEMENTIA NOT MENTIONED:
[Does/Did] your (Q1B CODE) suffer from Alzheimer’s or other mental
confusion?
YES—ALZHEIMER’S
YES--OTHER
NO
DK
REF
13. For how long [have you been providing/did you provide] help to your (Q1B
CODE)? PROMPT: Your best estimate is fine. PRE-CODED OPEN END
_____ YEARS
SIX MONTHS TO ONE YEAR
LESS THAN SIX MONTHS
OCCASIONALLY, ON AND OFF
DK
REF
I’m going to read a list of kinds of help, which might be provided to a person, if
the person cannot do this by him or herself. For each, just tell me if you
[provide/provided] this kind of help. [Do/Did] you help your (Q1B CODE)....
YES
NO
DK
REF
14. Get in and out of beds and chairs
15. Get dressed
16. Get to and from the toilet
17. Bathe or shower
18. Dealing with incontinence or diapers
19. By feeding him or her
20. Giving medicines, pills, or injections
[Do/Did] you provide help for your (Q1B CODE) with:
YES
NO
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DK
REF
21. Managing finances, such as paying bills, or filling out insurance claims
22. Grocery shopping
24. Housework, such as doing dishes, laundry, or straightening up
24b. Preparing meals
25. Transportation, either by driving him or her, or helping your (Q1B CODE) get
transportation
26. Arranging or supervising services from an agency, such as nurses or aides
IF NO/DK/REF TO ALL Q14-Q26: TERMINATE (TREAT AS NON CAREGIVER
HOUSEHOLD)
27. Thinking now of all the kinds of help you [provide/provided] for your (Q1B
CODE), about how many hours [do/did] you spend in an average week,
doing these things?
LESS THAN 1 HOUR PER WEEK
____ HOURS PER WEEK
CONSTANT CARE (VOLUNTEERED)
DK
REF
Medications
28. [Does/Did] your (Q1B CODE) take any prescription medicine?
YES
NO – SKIP TO 31
DK– SKIP TO 31
REF– SKIP TO 31
29. Would you say your (Q1B CODE) [needs/needed] someone to oversee giving
him/her medicine in the right amount and on time, or that he/she
[manages/had managed] this well on his/her own?
NEEDS HELP
MANAGES ON OWN
DK
REF
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30. Do you feel you [know/knew] as much as you [need/needed] to about the
prescription medicine your (Q1B CODE) [takes/took], or that you
[need/needed] to know more about it?
KNOW AS MUCH AS NEED TO KNOW
NEEDED TO KNOW MORE ABOUT IT
DK
REF
Other caregiver support
31. Has anyone else provided unpaid help to your (Q1B CODE) during the last
12 months?
YES
NO –SKIP TO 34
DK – SKIP TO 34
REF – SKIP TO 34
32a. What relationship [are/were] they to your (Q1B CODE)? CODE UP TO
TWO
IF “CHILDREN”, PROBE: Would that be (Q1B CODE)’s son or daughter or both?
CODE IN TWO SEPARATE COLUMNS.
SPOUSE
MOTHER
FATHER
SON
DAUGHTER
FATHER-IN-LAW/MOTHER-IN-LAW
BROTHER
SISTER
BROTHER-IN-LAW/SISTER-IN-LAW
GRANDSON/GRANDDAUGHTER
OTHER RELATIVE
ALL FAMILY
NON RELATIVE/FRIEND/COMPANION/NEIGHBOR
VOLUNTEER (E.G., RED CROSS)
NIECE/NEPHEW
SON-IN-LAW/DAUGHTER-IN-LAW
OTHER (SPECIFY____)
NO ONE ELSE (GO TO Q34)
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DK (GO TO Q33)
REF(GO TO Q33)
Q32b. Just to be sure I have this down correctly, that would be your (Q1B
CODE)’s (Q32b CODE) who also [provides/provided] care?
YES
NO
DK
REF
33. Who would you consider to be the person who [provides/provided] most of
the unpaid care for your (Q1B CODE): you yourself, or someone else?
SELF
SOMEONE ELSE
WE SPLIT IT 50-50 (VOLUNTEERED)
DK
REF
(IF NURSING HOME IN 6, SKIP TO Q39)
During the last 12 months, did your (Q1B CODE) receive paid help from any of
the following – regardless of who paid for it. First”
REPEAT STEM AS NECESSARY
YES
NO
DK
REF
34. An aide or nurses hired through an agency or service?
35. An aide or nurse hired independently– that is not through an agency or
service?
36. A housekeeper hired to clean or cook?
37. Any other people who are paid to help her/him?
38. (IF YES TO ANY IN Q34-37 ABOVE): Who would you say
[provides/provided] more of your (Q1B CODE)’s care: you, other unpaid
helpers, or paid helpers such as nurses or aides?
YOU (THE RESPONDENT)
OTHER UNPAID HELPERS
PAID HELPERS
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DK
REF
Stress on working caregivers
39. Now I have a few questions about you. Are you currently:
Working full time, (GO TO 41 IF Q1a = 1, CURRENTLY)
Working part time, (GO TO 41 IF Q1a = 1, CURRENTLY)
A student,
Disabled,
Retired,
A homemaker,
Unemployed and looking for work, or
Something else (SPECIFY _____)
DK
REF
40. [Have you been employed at any time since you began helping your (Q1B
CODE)? / Were you employed at any time while you were helping your (Q1B
CODE)]?
YES
NO (SKIP TO 52)
DK (SKIP TO 52)
REF (SKIP TO 52)
In your experience as both a worker and a caregiver, did you ever:
YES
NO
DK
REF
41. Have to go in late, leave early, or take time off during the day to provide care
42. Have to take a leave of absence
43. Have to go from working full-time to part-time, or taken a less demanding
job
44. Have to turn down a promotion
45. Lose any of your job benefits
46. Have to give up working entirely
47. Choose early retirement
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Physical, emotional and financial stress of caregiving
52. ONLY ASK IF CARE RECIPIENT IS NOT R’s SPOUSE IN Q1b
How much of your money would you estimate you [spend/spent] in a
typical month for groceries, medicines, or other kinds of cash support for
your (Q1B CODE)’s care, if any? PROBE: Your best estimate is fine.
_____ RECORD AMOUNT TO NEAREST DOLLAR
DK
REF
There may have been other ways in which providing care to your (Q1B CODE)
has affected your life. As a caregiver,
YES
NO
DK
REF
53. [Do/Did] you have less time for friends or other family members than
before?
54. [Do/Did] you have to give up vacations, hobbies, or your own social
activities?
55. [Do/Did] you have to get less exercise than before?
56. Think of a scale from 1 to 5, where 1 is not a strain at all and 5 is very much of
a strain. How much of a physical strain would you say that caring for your (Q1B
CODE) [is/was] for you?
1 NOT AT ALL A STRAIN
2
3
4
5 VERY MUCH OF A STRAIN
DK
REF
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57. Using the same scale from 1 to 5, where 1 is not at all stressful and 5 is very
stressful, how emotionally stressful would you say that caring for your (Q1B
CODE) [is/was] for you?
1 NOT AT ALL STRESSFUL
2
3
4
5 VERY STRESSFUL
DK
REF
58. Using the same scale from 1 to 5, where 1 is no hardship at all and 5 is a great
deal of hardship, how much of a financial hardship would you say that caring for
your (Q1B CODE) [is/was] for you?
1 NO FINANCIAL HARDSHIP AT ALL
2
3
4
5 GREAT DEAL OF FINANCIAL HARDSHIP
DK
REF
59. We have been talking about the help you [provide/provided] for your (Q1B
CODE). Do you feel you had a choice in taking on this responsibility for caring
for your (Q1B CODE)?
YES
NO
DK
REF
I’m going to read a list of ways that caregivers such as yourself have coped with
the demands of caregiving. For each one, please tell me whether you have used
any of these. [Have/Did] you ever [tried/try] to cope with caregiving stress by:
READ LIST
YES
NO
DK
REF
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Appendix C: CATI Questionnaire
60. talking with or seeking advice from friends or relatives?
61. exercising or working out?
62. taking any kind of medication?
63. talking to a professional or spiritual counselor?
65. praying?
66. going on the Internet to find information?
67. reading about caregiving in books or other materials?
IF YES IN 66. ASK 68-70:
Which of the following things have you looked for on the Internet?
YES
NO
DK
REF
68. Information about your (Q1B CODE)’s condition and treatment?
69. Information about services available for people like your (Q1B CODE)?
70. Support or advice from people with similar caregiving experiences?
Information/Services
In your experience as a caregiver, [have/did] you ever....
YES
NO
DK
REF
PLEASE PROGRAM SO THAT Q71 AND Q72 COME LAST IN THE SERIES
71. [Requested/Request] information about how to get financial help for your
(Q1B CODE)?
72. [Taken/Take] part in support groups for caregivers?
73. [Used/Use] a respite (RESS – PIT) service to take care of your (Q1B CODE) to
free up your time?
74. [Helped/Help] enroll your (Q1B CODE) in Adult Day Care?
75. [Helped/Help] enroll your (Q1B CODE) in a recreation program or camp?
77. [Had/Have] an outside service such as Meals on Wheels deliver meals to
your (Q1B CODE)’s home?
78. [Had/Have] an outside service provide transportation for your (Q1B CODE)
instead of you providing the transportation?
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Have you done or obtained any of these types of things to make it easier to care
for your (Q1B CODE):
YES
NO
DK
REF
79. Had modifications made in the house or apartment where your (Q1B CODE)
[lives/lived] to make things easier for your (Q1B CODE)?
80. Obtained formal training of some sort about how to care for a person with
your (Q1B CODE)’s needs?
81. Obtained a bathing bench, magnifying lens for reading, or other helpful
devices for your (Q1B CODE)?
As a caregiver, on which of the following do you feel you [need/needed] more
help or information:
YES
NO
DK
REF
82a. Keeping the person I care for safe at home
82b. Managing challenging behaviors, such as wandering
82c. Easy activities I can do with the person I care for
82d. Managing incontinence or toileting problems
82e. Moving or lifting the person I care for
82f. Balancing my work and family responsibilities
82g. Finding time for myself
82h. Choosing an assisted living facility
82i. Choosing a nursing home
82j. Choosing a home care agency
82k. How to talk with doctors and other healthcare professionals
82l. Managing my emotional and physical stress
82m. Making end-of-life decisions
82n. Finding non-English language educational materials
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83. If you were looking for information about some aspect of helping take care of
your (Q1B CODE), where would you turn? DO NOT READ CODES MULTIPLE
PUNCH IF THEY VOLUNTEER MORE THAN ONE
DOCTOR
NURSE, OTHER HEALTH PROFESSIONALS
INTERNET
BOOKS, MAGAZINES, LIBRARY
EMPLOYER
SENIOR CITIZEN’S CENTER
OTHER (SPECIFY _____)
DK
REF
Demographics
And finally, just a few questions for classification purposes only....
87. How would you describe your own health? Is it excellent, very good, good,
fair, or poor?
EXCELLENT
VERY GOOD
GOOD
FAIR
POOR
DK
REF
88. How would you say taking care of your (Q1B CODE) has affected your
health? Has it made it better, not affected it, or made it worse?
MADE IT BETTER
NOT AFFECTED IT
MADE IT WORSE
DK
REF
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89. Are you currently: READ LIST
Married,
Living with a partner,
Widowed,
Separated,
Divorced,
Single, that is never been married
DK
REF
91. Did you ever serve on active duty in the US Armed Forces? PROBE: Army,
Navy, Air Force, Marines, Coast Guard or Women’s Armed Forces
YES
NO
DK
REF
92. Did your (Q1B CODE) serve in the US Armed Forces?
YES
NO
DK
REF
93. Are there any children or grandchildren living in your household under 18
years of age?
YES
NO
DK
REF
94. What is the last grade of school you completed?
LESS THAN HS
HS GRAD/GED
SOME COLLEGE
TECHNICAL SCHOOL
COLLEGE GRAD
GRADUATE SCHOOL/GRAD WORK
DK
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REF
95. Last year, was your total annual household income from all sources, before
taxes over or under $50,000?
IF UNDER $50,000:
Over or under 30,000?
OVER (GO TO 96)
UNDER
DK (GO TO 96)
REF(GO TO 96)
If UNDER $30,000:
Over or under 15,000?
OVER (GO TO 96)
UNDER (GO TO 96)
DK (GO TO 96)
REF(GO TO 96)
IF OVER 50,000:
Over or under 100,000?
OVER (GO TO 96)
UNDER
DK (GO TO 96)
REF(GO TO 96)
IF UNDER 100,000:
Over or under 75,000?
OVER (GO TO 96)
UNDER (GO TO 96)
DK (GO TO 96)
REF(GO TO 96)
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96. Besides the telephone number I reached you on, how many other telephone
numbers in your house, if any, could I have reached you on? Don’t include fax
or modem lines or cell phones.
RECORD SINGLE DIGIT NUMBER
___
NONE
REF
If the situation arose, would you be interested in participating in future research
on caregivers?
YES (RESPONDENT’S NAME ______, PHONE __________)
NO
Also, the results of this survey are totally confidential. However if a reporter
writing a story about the results of the overall survey wanted to ask you more
questions or get a quote from you for a news story, would you like to get a call
back or not? It is completely optional.
YES
NO (THANK AND TERMINATE)
DK (THANK AND TERMINATE)
REF (THANK AND TERMINATE)
IF YES, ASK: Who should the reporter ask for? _____________ What is the best
number to reach you during the day on weekdays? (____) _________
Thank you very much for your time. Your responses have been very helpful to
this research.
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